Support thread for those with thyroid related disorders

[yeghoulsandlittledevils]

This is a support thread for anyone who would like to ask any general questions about thyroid function or life with thyroid conditions (especially if you don't want to start a new thread) and also for any Mumsnetters who have been diagnosed with thyroid disorders (hypothyroidism, hyperthyroidism, Hashimotos and related conditions) to chat and support one another. Please come and be part of the growing Mumsnet thyroid support network.

[Slavetominidictator]

Would anyone mind if I ask a question about my DH?
He had a right hemicolectomy three years ago, as a result of misdiagnosed appendicitis (he ended up having half of his bowel removed). He is a doctor himself and didn't want to sue but it was negligent.
Since then he cannot absorb vitamin B12 (the section of the bowel that does this has been removed) and so was supposed to have injections of this every three months. The injections had to move increasingly closer together because of symptoms of lethargy, low mood, etc, so they are now four weeks and his symptoms are still quite extreme for two weeks before he is due his injection yet his blood level of B12 is above what it ought to be, so four weeks is the closest allowed. I don't think the solution is more B12, since I think there has been a knock on effect on his thyroid.
He has many symptoms - feels the cold terribly, very low pulse 40-50, itchy skin, muscle loss, extreme lethargy. We have been to the GP who says his TSH is fine. I asked for further tests, T3, T4 and today he has rung up for his results, only to be told he is fine.
It sounds as though plenty of you are far more aware than I am of what can be done.
What do I do next? I've heard of an endocrinologist in Oxford called Prof John Waas. Is it worth going to see him privately, even if my DH's blood results are all within normal range. I know something is very wrong and it is horrible for him to have to live like this.

[delasi]

Slave So sorry to hear that you and your DH have to struggle with the bowel issue, pernicious anaemia and then what sounds like a thyroid issue. I just wanted to say that if you can go private, I know a lot of people do for thyroid issues due to the serious lack of awareness amongst a lot of GPs and they find it so useful. Also when you get results from the docs, do they say 'fine' or do they give the numbers? Since being seen by an endo (when pg) I became much more aware of where my numbers need to be in order to function well so I always ask for a copy - sometimes you get a look, but just push for it. Eg, the TSH range (the right one!) is 0.3-3.0 for healthy - I really need to be 1-2 in order to function. If I'm over 2 I'm so tired, symptoms start flaring, if I'm under 1 I start getting hyperthyroid symptoms.

The GP/doc should have copies of all of the past test results so see if you can get copies for all of them - it's his personal medical history, he should be allowed to have access to it. Then you can compare how they are against one another as well as against the proper guidelines, as saying 'fine' may not even mean that they are in the healthy range with so many GPs being behind the times on that one. They may also only be looking at one result (eg TSH) and not bothering to mention any of the others even if they've screened them all.

Beyond that, even if they are in range the symptoms are more important than the numbers. I would also recommend pushing for other tests if they haven't been done - ferritin, folate, vit D for example. DH doesn't have a thyroid problem but has had a hemicolectomy amongst other bowel procedures (chronic gastro problem), he has pernicious anaemia and gets B12 injections but his bigger problem right now is low ferritin, so the lethargy is really kicking in as is greater sensitivity to the cold. However he doesn't have any of the other typical thyroid symptoms as your DH does so it's less likely, but still, it's always good to screen as much as possible in these cases. My previous GP would also do a regular (yearly) screen of my liver function just to be safe (I haven't been with my current GP long enough to warrant asking).

[Pobblewhohasnotoes]

Another hypo here, I'm on 50mg. Just sadly suffered a miscarriage and am concerned it may be due to my thyroid. Obviously it may not be. My consultant just tells me my levels are normal.

[thereinmadnesslies]

Great idea for a thread.

I have hashimotos, which was diagnosed about 2.5 yrs ago. I'm currently on 125 / 150 mcg but I still don't feel 'right'. I'm also having increasingly bad gut problems - really excessive stinky wind, stomach pains etc. I was tested for coeliacs last week but the test was negative which really surprised me. Has anyone else had this?

[delasi]

I have just been reading the first post of this series on thyroid disorders by Chris Kresser, I think someone may have mentioned it on the other thread. I've only just started but I'm finding it interesting already, especially thinking of the auto-immune problem and not simply a thyroid problem.

I was diagnosed 2.5 years ago and tbh it was very much underwhelming - I had a routine appointment with my GP of the time for a pill check, I had been feeling so tired in the month previously so I asked him what vitamins were good for energy, as I'd been taking a basic B Complex in the hope that it might help but it hadn't. He suspected that something was up - he said, "You're 22, you shouldn't be so tired" - and sent me for a blood test checking my iron, blood glucose and thyroid. I got a phone call about a week later saying, "You've got hypothyroidism, come in to collect a prescription" and that was it. I had to start Googling and all sorts, I had no idea what it meant. Figured it would be something simple, take some meds, go on my merry way. Hmph! If only.

Over the last 2 years I've been trying to learn more and fortunately have had 2 great GPs in succession as well as being seen by a good endo in pregnancy. On average I've had my bloods done every 3-4 months in that time and have had ferritin, B12, folate and vit D tested alongside thyroid function as a minimum, so I think I've had great care especially compared to some people. But, I still have so many issues with it

I had no idea that hypothyroidism was most commonly caused by autoimmune disease until about 6mo ago and how much it interlinked with other diseases/problems as a result. I'm awaiting test results for coeliac disease this week as I'm really struggling at the moment with so many symptoms but have a lot of abdominal pain thrown in there.

As we go on I will share as much as I know that has helped me, even though I'm not at 'perfect' so I hope that will be of some help.

Will say now though - and think I put this on Amanda's thread - diet changes have had a positive impact for me. I haven't tried gluten free (we'll see once I get my results back too), but I was advised by my very helpful GP about cutting down red meat, caffeine & white/processed carbs (max. 3 days a week), upping water intake, consuming a lot of slow energy release foods (oat-based snacks and fruit are great for between meals), and not getting too carried away with low fat dairy (I treated low fat Greek yoghurt like the answer to my diet woes ). Plenty of fruit and veg. He told me to not bother with supplements/vits until I sort out my diet, so that I can absorb things properly and not just add extra things for the liver to process. I was healthy before, but not like this. Once I started it I felt better within weeks, and my weight just started to go down at a healthy rate (about 1-2lb/week). I also generally avoid goitregenic foods (but I'm not so strict as to avoid a dash of soy sauce, for example) - was amazed by the difference, I kidded myself at first that it probably wasn't doing anything then one day I had a soy milkshake and within hours I was getting a full whack of tiredness, aching, etc.

I lost track of it lately just, well, just because. No good reason really, I've been feeling so rubbish with renewed symptoms that I've been 'treating' myself a lot (counter productive, I know) so I've been easing myself back into it over the last couple of weeks. I'm pretty good on all fronts except caffeine (I usually have a coffee a day, 1 or 2 days a week I might have two in a day, I just really like the taste so will mve to decaf a few days and then go from there). We also eat mainly rice - white basmati rice, we have a 10kg bag in the kitchen! - so it's not so friendly to the process as a white carb, but on the other hand it is gluten free, so we'll see. Have just stocked up on sweet potatoes as he recommended them for energy, low glycaemic index, filling, and they really are great not so much when I turn them into pie.

Anyway, very long post, sorry!

[digerd]

I am reading this with interest as people's symptoms are so different from what I experienced.
I had an overactive Thyroid and was dangerously ill , in my 20s. Was put on the Carbimazole to slow the Thyroid down but was overdosed and became practically non-active. I was not given Thyroxine.
My symptoms of the under/non-active, were enormous calf muscles, but they wouldn't work as immediately cramped up. That soon applied to every single muscle in my body.
I was told by a friend that I was slurring my speech and had I been drinking? No, it was my brain and articulation that had been slowed down.
I also put on 2 stone in 10 weeks and looked like a barrel, according to my sister. Despite having little appetite though eating non-stop and losing weight when I was over-active.

[RockinD]

jitterbug you have Hashimoto's Disease and you should be treated because of the presence of antibodies. It is not appropriate to wait until your TSH goes out of range. You could wait for ever for that.

To clear up the other point yes, if you are being tested for coeliac disease you need to be eating gluten, at least until the testing is done. If you have tested negative for coeliac, but positive for thyroid antibodies, you can cut out the gluten and you may feel better for it.

[TwoStepsBeyond]

Hello! I've had Hashimoto's since DS1 was born 13 years ago. Took me several months & several trips to the GPs to finally get them to take it seriously, after passing it off as PND, general tiredness etc.

I'm on 100mcg and function reasonably well most days, although I can't really pick up the slack when things get busy, I go into meltdown with D&V and shakes etc if I do too much. I've still never been 100% but I am fortunate that I've convinced my GP to give me some 25mcgs which I take when I'm feeling particularly low.

I also had to self-diagnose low B12 levels, as I was finding my face, hands and feet were numb a lot. This was bad enough but then I stopped being able to orgasm too and thought 'enough's enough!' so went and demanded a B12 test even though it was "very unlikely" to be the problem. Surprise surprise, it was the problem and I was soon feeling much better in that regard.

Because of this (& my DM's GP missing her breast cancer) I have a deep mistrust of doctors in general, so anything I can do to help myself is very welcome. Thanks for this thread.

[TwoStepsBeyond]

Korma would it be possible for you to look at a natural thyroid replacement like they use in America? As you have no thyroid at all and are totally reliant on your medication, you have no way of getting any of the other hormones produced by the thyroid(T1,2,3, & 5), only the T4. I presume in those of us who are still feeling rubbish despite being 'in the range' this could be why, but especially where you have no hope of producing any of those yourself it might help?

[yeghoulsandlittledevils]

Welcome Korma of course it's ok for you to jump in! It sounds like you have a lot of complications and related conditions, which must be hard day-to-day. So sorry to hear that you haven't found any replacement thyroxine brand/type or amount that works for you (I assume you've tried Armour and the other combinations? this blog has all kinds of information about the different combinations of new drugs available in America. Something in there might be of help to you, so thought it worth sharing.

Depression and anxiety do seem to go with the territory of a malfunctioning thyroid too.

Welcome, please stay and help to give advice and feel free to chat here.

[yeghoulsandlittledevils]

Just want to add the links to other recent MN threads where there is some very good advice which is worth reading. this one about hair loss and this one where we realised that there are enough of us actively posting to create this support thread.

[TwoStepsBeyond]

RockinD can you elaborate or link please - "Thyroid antibodies feed on gluten, so if you have Hashimoto's Disease, you need to be gluten free, whether or not you are coeliac."

My DP has a different autoimmune condition, he is always nodding off, has restless leg, issues with fluctuating weight etc and has recently gone gluten free which has helped a lot with headaches, stomach problems and generally feeling unwell. I'm thinking he should get a thyroid test too.

We both do bouts of low carb dieting and feel so much better, but I find its not sustainable. If I cut out gluten but not all carbs I might feel better - that is a revelation!

[yeghoulsandlittledevils]

Slave Welcome, and thank you for your post. I do think that if TSH test results return a 'normal' result for hypothyroidism, it would be worth your DH going back to his GP to ask for further tests. delasi shared a link to a really useful website which has a lot of good information on it. This page about thyroid/pituitary/adrenal conditions which are not detected with the TSH test could be of use to you, and it would be worth pursuing this with your DH's GP (imo) and asking for the full raft of thyroid function tests (and auto-immune testing, if your husband recognises symptoms which fit those conditions).

Finding the best treatment for thyroid conditions can take months, even years, even when medics are all able to do their best, so going to a private doctor at this stage would cost you a lot extra. I'd see what you can find out through the usual avenues first. Sometimes it is just the nature of the way in which the thyroid works (or doesn't) that makes it a slow process, not the health service. Once you have a bit more information, then try researching what advantages private would give you.

One thing I would not bother with is those thyroid tests you can order online, that arrive through the post. I tried 2 and they both came up as 'normal' (but it was useless - not even any range, just an indicator line like a pregnancy test.) Expensive rubbish, if you ask me!

[yeghoulsandlittledevils]

Pobble Welcome! Sorry for recent your loss. I know it can be a worry to have a miscarriage and not know what the cause was. Then we're told not to worry because that will make it worse!

I know I found diet and natural remedies and good old school advice very helpful when the doctors has no answers. I don't mean anything too 'woo' just sensible nutrition, moderate comfortable exercise and reading around to inform yourself as much as you can about your own sensitivities and susceptibilities (which could lead you to discovering something that helps you, too).

In the mean time I found this information about different foods and how they help or hinder thyroid function was interesting and useful.

[yeghoulsandlittledevils]

RockinD Could you please expand on what you said to Jitterbug: "you have Hashimoto's Disease and you should be treated because of the presence of antibodies. It is not appropriate to wait until your TSH goes out of range. You could wait for ever for that."

What treatment should she be getting? (This affects many people, so I feel it is important to be giving correct information here.)

[Pobblewhohasnotoes]

Thanks yeghoulsandlittledevils.

It's a hard thing to deal with. I was diagnosed after I had my DS. Wasn't until I was in levo that I lost my baby weight!

My tsh has dropped from 2.5 to 1.5 ad my ft4 has dropped from 16-14. There seem to be lots of guidelines about optim

[Pobblewhohasnotoes]

Oh stupid phone!

Optimum levels for planning a pregnancy and pregnancy itself. I'm not sure my ft4 is high enough. I know my levels are ok, but I'm not sure they're the best they could be, although by tsh is ok. All I get told is 'you're fine'.

I feel really dizzy, not sure if thats to do with the miscarriage or to do with my thyroid and I'm so tired! Recently I've been going back to bed when my DS has a nap. Where's all this energy they promised me?

[yeghoulsandlittledevils]

thereinmadnesslies Welcome! To answer your question, I do remember getting gut problems years ago. The doctor told me it was irritable bowel syndrome, gave me some peppermint pills and phlox and sent me on my way. I cut out all refined foods, ate less bread and pasta and found that did help. Mainly it was giving up my then stressful job that helped the most though.

[yeghoulsandlittledevils]

Pobble if your hypothyroidism is due to hashimotos, could you be experiencing some hyperthyroidism now and then (dizziness, anxiety, exhaustion)? I don't know enough to advise, really. Do you have an endocrinologist? If not, I would ask for a referral if I were you, giving hypothyroid diagnosis and miscarriage and symptoms as your reasons. Pregnancy itself can cause hypothyroidism too, and sometimes that can be temprary. So it might be that you need a lower dose for now, and an increased dose when pregnant - this is based on what a lot of doctors claim to prescribe on their websites. and this

[yeghoulsandlittledevils]

digerd welcome! The extremes of hyper/hypo you underwent sound horrendous, it must have been really frightening. I assume they reduced your dose of Carbimazole to the correct levels to stop you stabilise your thyroid function? are you still on any medication for it? There seem to be fewer people affected by hyperthyroidism, but there are some. Although the symptoms of hyper/hypo are sometimes very different, they are connected and some people do experience a range of symptoms, some of which can be contra-indicators.

[yeghoulsandlittledevils]

TwoStepsBeyond Welcome, thanks for joining the merry throng! Well done on being persistent enough to get some answers out of your GP 13 years ago, I wish I had done the same or rather, that patients wouldn't need to be that persistent to get the right tests.

[Pobblewhohasnotoes]

Yes I see an endocrinologist. Hashimotos has never been mentioned. I also have a prolactinoma. To be honest I'm not sure if my thyroid issues are due to that or a separate thing. Have you heard of this? It's a whole other world of tests, scans and medication (hoo-bloody-ray...!).

[yeghoulsandlittledevils]

Some links to websites claiming links between hypothyroidism/hashimotos and complications in pregnancy:

patient care website - what they say to the patients

"Some women develop thyroid imbalance after having a baby. If it occurs, it typically happens about three to six months after the birth. Often this lasts just a few months and corrects itself. Treatment is needed only in a small number of cases. However, afterwards it is wise to have a yearly blood test, as there is an increased risk of developing autoimmune thyroiditis and long-term hypothyroidism in the future."

patient care webside - what they say to professionals

"Hypothyroidism in pregnancy is treated with a larger dose of thyroxine than in the non-pregnant state.
Women already on thyroxine before pregnancy should have their dose increased by approximately 30% at the beginning of pregnancy and have TSH and T4 levels checked every eight weeks."

Mayo Clinic.
"Some women develop hypothyroidism during or after pregnancy (postpartum hypothyroidism), often because they produce antibodies to their own thyroid gland. Left untreated, hypothyroidism increases the risk of miscarriage, premature delivery and preeclampsia — a condition that causes a significant rise in a woman's blood pressure during the last three months of pregnancy. It can also seriously affect the developing fetus."

a clunky slideshow summary of a study of connections between pre-ecpamsia and hypothyroidism

A longer written account of the same (or a similar) study.

Italian case study of causal link between hypothyroidism and hashimotos

[yeghoulsandlittledevils]

• that last link should read Italian case study of causal link between hypothyroidism and pre-eclampsia.