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.

[Pannacotta]

Hello all I would really appreciate from some advice as I think I may have thyroid issues.
I have been having bad period problems for the past year (heavy/erratic/bleeding at odd times) and have had some tests which are inconclusive so far, other than a small ovarian cyst and fibroids.
Had heavy bleeding last week following a womb biopsy and happened to check my temperature which was around 35. This made me wonder about my thyroid.
Other probs are unable to lose weight even when doing the 5:2 (only half a stone but still a bit odd), tired and forgetful, bit down generally and low energy, light headed.
I had bloods done last week and the results were
Ferritin 31
TSH 1.35
T4 13
Have been told these are fine and no further action needed but am not convinced.
I have been looking on-line but feel too tired to read through all the info out there, I cant afford to go private to get this sorted.
Would be very grateful for any suggestions/input.
Many thanks...

[tb]

Thanks to those who commented up the thread about my change to just T3 due to non-conversion.

I felt fine for a while, and lost 15kg - put 5kg back, but then it tailed off, and I now feel just as crap as ever. This did happen in the past when I seemed to pick up a little when my thyroxine was increased, but that didn't last either.

I did once, and only the once, see an endo at MRI who told me he knew all my personal biochemistry by just looking at me. Didn't even need to open the file. Apparently. Twat - imvho!

[AlexandraN]

Hi All

Just got my blood results: TSH 2.4 (normal range 0.27-4.20), Free T4 28.7 (normal range 12.0-22.0), Free T3 6.1 (normal range 3.1 - 6.8).

One measurement is slightly off, but others are ok. GP will refer me to an endocrinologist if I want a second opinion but they see no reason to be concerned. Should I ask for a referral or is it an accidental finding?

[YeGodsAndLittleFishes]

Hi AlexandraN, go for the referral. Cannot search on my phone just now but the high T4 is indicative of something happening. Posting so someone more knowledgeable gives a better answer!

(This thread dropped off my lists, sorry have been out of touch).

[helzapoppin2]

So, I recently upped my dose of thyroxine from 100 to 125 mcg's and added a multivitamin and my strange feeling of a fuzzy head has cleared. It's worrying how this has come on over time. I felt so fuzzy, it took a while to realise it could be due to not enough thyroxine.

[ELR]

Marking place, great thread will be back tomorrow to read and post.

[Gakkers]

Hi there, can I have some thoughts on my thyroid ishoooos please? I am 'borderline' under apparently and due to family history (Mum and sister badly underactive) my GP put me on a low dose -25 mgs or something. Anyway I took it for month or so and just didn't bother going back to doc. This morning my sister commented on my hair thinning at the front of my head which I noticed obvs due to hair loss every time I wash my hair, put fingers through hair etc. I have not put up weight, have shocking PMT - tender breasts for 2 weeks a month and dreadful moodswings, general aches and pains, and on and on. I am also stressed out of my mind due to husband's health probs (whole other thread). Could hair loss etc be stress related or thyroid? Guess I need to go back to doc and get bloods done. I hate the doc and hate being on meds. But something has to give. Sorry just venting really! Would be interested to hear from other borderlines with symptoms?

[chocolatefondue]

Hello, I went to see my GP recently with a whole range of symptoms which I put down to perhaps having an underactive thyroid. She carried out a blood test and the results have come back as normal - no action. My results were:

Serum free T4 level 13.0 pmol/L range = 12.00 - 22 pmol/L
Serum TSH level 2.23 mu/L range = 0.30 - 4.20 mu/L

Unfortunately I didn't have my T3 tested.

I am just not sure how to interpret the results. They look normal but what do they actually mean. I can't get a GP appointment for another 3 weeks to discuss the results in detail.

Many thanks for your help.

[RockinD]

Bumping because there have been a number of other individual thyroid threads recently.

[clarella]

Thanks rockin. Was about to post a question!

Can't believe ive bloody done it again! I had a nasty vomiting and d bug about 5 weeks ago which left my tummy off for around a week. I've been struggling with aches and pains etc since. Doh! forgot that absorption of thyroxine might not be great during that time!

I had a test 3 weeks after the bug and was surprised that Tsh was 1.6 as I'm on 150, a dose which I consider a tad high for me (pre child 125/150 alternately or 125 seemed best) as I'm slight and hover around 8 stone. I don't think my thyroid makes any thyroxine now. I'd expected Tsh to be lower than that. Then tonight I realised it may have been a hangover from the bug

My question is: those who are on thyroxine and probably don't make any of their own (or don't due to thyroid removal) do you ever take a wee bit extra when ill? And if so how much do you reckon is reasonable? A gp friend commented it's probably needed but not how much.

I really wish I could test my blood more easily myself to keep an eye on things!

[clarella]

Hi chocolate - do you understand what Tsh and t4 mean ? Before I teach a granny to suck eggs....

Its a tricky one your score. For me that score would make me feel unwell. Do you have family with thyroid issues?

[clarella]

Gakkers - that sounds very like thyroid issues.

Thyroxine is not really a medicine - it's a replacement hormone. If your body isn't making thyroxine you need more.

I often liken thyroid issues to diabetes in very slow motion - the effects of the hormone imbalance/ faulty feedback system are slow but in the long term still damaging. Diabetics take insulin, hypothyroids take thyroxine.

Great that your dr let you try a low dose; as it's your metabolism it really takes 6-8 weeks to feel the full effect (I guess as your cells fully replace etc). Definitely go back and get checked.

[LemonBreeland]

Hi all, just come across this thread, haven't read everything yet. I was diagnosed hypo in Feb, and got Graves disease diagnosis in June.

I feel like I'm currently blaming everything wrong with me on the thyroid issues. They haven't managed to get me on a dose of carbimazole that has settled me to normal yet.

[Woopsiedaisy]

Sorry if this question has already been asked and I have missed the discussion.

Is anyone else struggling to get Eltroxin? I was diagnosed 40 years ago and switched to Eltroxin when Thyroxine ceased to work well for me (due to changes in the manufacturing process)

Now my Doc says Eltroxine is no longer available.

Six months back on Thyroxine and I feel awful, lethargic, hair thinning, dry skin and weight creeping on.

I would just like to know if others have the same issue or am I being impacted by cost rationing.

[RockinD]

My understanding is that Eltroxin under the brand name is no longer available in the UK, but that one of the generics is supposed to be identical.

The fillers can make a difference. I am fine on Mercury Pharma (which seems to be the spawn of the Devil for most people) but Actavis makes me itch. You may have to work with your GP to find a generic which has the same fillers as Elltroxin. The info is all on the internet.

If your GP doesn't want to get involved in that exercise, ask him for hypoallergenic levothyroxine. He won't want to give you that because it is very expensive, so he should come round pretty quickly!

[Redhead11]

I developed a lump in my thyroid sometime in the first couple of months after DD2 was born. I saw the lump when she was about 4 months old. Bloods came back normal, so i went back and was referred. I was told it was likely a cyst and they would aspirate on the spot. (I am really phobic about people handling my mouth/neck) It turned out not to be a cyst so i was sent for a nuclear x-ray. That showed that i had an encapsulated tumour. I finished breast feeding and had the tumour removed on DD2's first birthday. I was told 6 weeks later that they needed to go back for the rest of the gland. I didn't need chemo because of the encapulation, but they were afraid that the tumour might grow if the rest of the gland was left in situ. I put on 3 1/2 stone in the 6 intevening months and 18 years down the line have managed to shift only a stone and a half. I am constantly exhausted, which is not helped by my BP tablets. I was originally told it was caused by my pregnancy, but have since learned that thyroid troubles run through the female side of my family. I am never at the right temperature and feel the cold very badly indeed. I would love to know what it feels like to wake up and feel i have had a good night's sleep. I'm looking forward to reading more posts on this topic.

[RockinD]

Thyroid hormone replacement can be more tricky for people without a thyroid as some of you don't convert thyroxine(T4) to the T3 the body needs and need alternative medication. There are also different rules for treating people who have had thyroid cancer.

If you have not felt well for the last 18 years, which is how I read your post, you need to forget any ideas you might have about the NHS getting you well and keeping you well and take matters into your own hands.

I would suggest you get hold of the last two years test results (they are your data and you are entitled to them) together with the reference ranges, and post them on a forum like the Thyroid UK forum on //www.healthunlocked.com. Totally non woo and very knowledgeable, the people on there should be able to help you plan to regain your health and well being.

[Redhead11]

I have no idea what my last readings were, apart from a change that required a drop in my dosage. I have changed GP in the last 5 years due to moving and have not seen a consultant in about 12 years. The guy who did the op was lovely, but was just a general surgeon. I wouldn't say i haven't felt well, i just haven't had much energy. I used to ride regularly, but an unrelated injury put a stop to that. I am on my feet all day at work and come late evening, i can be dizzy with tiredness. I am pretty sure that i am due to have my bloods done again quite soon, so if i can manage to get a GP appointment when i actually have the time to go along, i might manage to have a chat about this.

[Woopsiedaisy]

Thanks for your response RockinD.

I actually saw a Consultant Endocrinologist several months ago who told me that he understood Eltroxin was still being made.

I am currently using the Mercury Pharma generic but as I said going down hill. My GP (who is fantastic) referred me because this is not her area of expertise.

However I will ask her about the hypoallergenic Levothyroxine and if necessary ask for another referral.

[Redhead11]

I never saw a specialist, simply because where i lived, there wasn't one. i would have had to have been referred to another health board. It has never been suggested by the new GP that i should see one either. mind you, right now, nothing surprises me about the NHS.

[RockinD]

As so many dissatisfied customers posted on the 'Thyroid Issues and GPs' thread last week, I thought I would resurrect this one.

[Snoopysimaginaryfriend]

Posting for traffic.

Hello. Just looking for some advice. Sorry this is long.

I am 29.

I was diagnosed with hypothyroidism in July 13. No idea what my tsh was but was told take this tablet and it will all be fine (50mcg levothyroxine)

In September 14 told gp I want to TTC im coming off the pill. She says great, you're tsh is 1.27, you'll have no problems.

October 14, I'm pregnant, no period after stopping the pill. Gp says your tsh has gone up to 1.8, increase to 75mcg.

Missed miscarriage and erpc in December. Same day it was discovered gp says your tsh is 0.27! Go back to 50 mcg.

February 3rd 15 Bfp! Have blood test and GP says your tsh is fine don't change anything so I don't question anything.

Today, second miscarriage confirmed. GP not interested, says its just like having a period two weeks late. I ask what tsh level was from last test out of interest. It's 2.28 but no change in meds.

Everything I've read says 1-2 is best to TTC again.

I don't understand how the highest level is now suddenly ok when it wasn't before.

I know I should have asked my GP but I was crying, embarrassed etc

Please tell me your positive stories and reassure me I can still conceive at 2.28 or what I should be doing or asking to sort this out.
Two miscarriages in three months has really hurt and the only thing keeping me going is the thought that next time it goes wrong they will at least do tests. I was under the impression I should tell my GP asap if I got pregnant but now I just feel like I wasted their time.
I'm terrified I'll never have a baby.