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Thyroid help

(27 Posts)
LuigiB Sun 23-Oct-16 18:20:16

I'm not sure whether I should go for a second opinion about this and would really appreciate any advice from anyone that's been through something similar.

About six months ago I had what I would describe as a surge of hormones - a huge increase in libido blush, and a flushed face and feeling like my skin was really hot. The period after that was really heavy and came about three days early (I have been like clockwork for the 27 years I've had periods. The next few months were the same - early and heavy. I went to the doctor and had blood tests done - my TSH levels were over 10 (T4 was normal) and my iron was really low.

I got told to take iron supplements for two months and then come back for another blood test where my thyroid antibodies would be tested as well - in the meantime I found I was experiencing other things that were a bit weird (I have anxiety issues but it ramped up hugely, my left hand would shake sometimes and I would get dizzy as well as being tired all the time).

I was retested and found that my TSH levels had dropped to 5.7, but my anti-TPO antibodies were 283 (normal range is 0-60), my doctor in the hurried 2 minute phone call said - so how do you feel? To which I responded - I'm okay, I can get out of bed and go to work but I know things aren't right. We ended the phone call with her saying that I can have a blood test every year to make sure I am not hypothyroid but that's about it.

I just feel like I am in a bit of limbo waiting for something to happen - I would rather not be on medication for life, but I don't really want a period every three weeks for the next however many years, and anxiety so bad that I get panic attacks amongst other things.

So should I go to an endocrinologist? Should I just leave it and see what happens? Anyone been through anything similar? I am in my late thirties and had a grandmother with hypothyroidism if that adds anything.

Thanks in advance for any advice!

Johnstonbananas Mon 24-Oct-16 09:45:38

Do not just leave it. I listened to my doctor a few years ago when he said my blood test was normal. It's now taken me two years to get my thyroid regulated, I'm still exhausted every day and have gained 5 stone.

Go back and get re tested right away and ask for a referral. Be demanding

LuigiB Mon 24-Oct-16 11:03:19

Thanks for the reply Johnstonbananas. That's what I'm afraid of - that I'll get to the tipping point where my symptoms are really bad and then it will be very hard to get back to normality from there. I work in immunology myself and know that my antibodies are raised because they are reacting to something (my thyroid), but until I can't get out of bed through exhaustion or my hair is falling out or I can't remember my own name I don't think my doctor will do anything else for me unfortunately.

I guess it's time to save up to see an endocrinologist!

Johnstonbananas Mon 24-Oct-16 11:49:58

Just tell your GP that your symptoms have gotten worse. Don't ever say you are ok because they are so busy if you feel ok they will move on to someone else.

The left hand side thing I have still and my left hand and leg gets numb and I can't even grip this properly sometimes so please go back to your GP and say your symptoms are much worse

feesh Mon 24-Oct-16 12:00:34

5.7 is really bad; I wouldn't be able to function at that level. I was diagnosed at 4 and my TSH is below 1 now.

I believe the antibodies can cause issues if you get pregnant in that your body can attack the foetus' thyroid, so it's something to be aware of if TTC.

Try and see another GP maybe before forking out for an expensive endocrinologist?

LuigiB Mon 24-Oct-16 17:41:30

Thanks both for the replies - I am fortunately not TTC and have finished having dc. I am really thinking about going back to a different GP (there are about 4 in my practice) especially after I inquired about an endocrinologist and the cost and waiting times made my eyes water. The thing that gets me the most is the mental health aspect - there's no reason for me to feel depressed or anxious but I am, and it's affecting my relationships both with DH and DC. I just want an answer really!

Vetsandpets Mon 24-Oct-16 17:46:40

I would keep going back - it took 2 years of going to the doctor on and off for me to eventually get a diagnosis of hypothyroidism and several more months of trial and error to get the right dose of levothyroxine. Many doctors are fairly ignorant about the thyroid.

This forum

healthunlocked.com/thyroiduk

has some really knowledgable and helpful people

WinchesterWoman Mon 24-Oct-16 17:51:03

Try taking a complete B supplement for a bit. I don't really know all that stuff about TSH levels but a B complex made me feel normal when my hormones went wonky.
Not very medical language but the B complex is good stuff. You could google vitamin B thyroid and get some explanation.

Bibbidee Mon 24-Oct-16 17:57:38

Hi

Go google high TPO and the connection to Hashimoto. With Hashimoto (autoimmune version of Hypothyroidism) your TSH can go up
And down.

Have a look at NDT, Natural Desiccated Thyroid as opposed to Levothyroxine. Look at T3 as well. See how some people cannot convert T4 to T3.

I'm not a Dr but both my teen kids have Hashimoto. My TSH is 5.4 and that's apparently in range....whatever!

Anyway here's a really good group to join: https://www.facebook.com/groups/498553780284022/

Bibbidee Mon 24-Oct-16 17:59:00

Oh yeah and look at the connection between Pernicious Anemia (Autoimmune kind) and Hashimoto...

yellowsquarepostit Mon 24-Oct-16 18:01:21

I would go back to a different GP, check on health unlocked too.

You do have autoimmune thyroid disease; at the moment your thyroid is just about coping but it could change. I'd test more frequently than once a year, certainly the minute you feel different.

Technically I thought they tended to treat at tsh 10 with symptoms actually. You may have a bit of a goitre? Your thyroid may be growing to accommodate the attack on it. This is why they sometimes don't treat, however many do esp if symptomatic. Your thyroid would eventually shrivel up I believe, but is likely to do so anyway!

The British thyroid foundation are good too; you can ring their help line.

The BMA do a book called understanding thyroid disorders by A Toft which may also be helpful.

Do get your iron up and keep vit d good too.

yellowsquarepostit Mon 24-Oct-16 18:05:01

The first approach would be t4, making sure other vitamins are good and tsh is around 1 or lower half of ref range.

Only if all this was perfect and had been for 6 mo to a year with no symptom improvement would you possibly consider t3/t4, but currently it's not the route the NHS takes unless lots of proof you can't convert.

They're looking into developing a t3 with a longer half life. Currently combined t3/t4 hasn't been proven to be more effective that t4; not many patients get the right dose though or the other aspects properly looked at.

LuigiB Mon 24-Oct-16 19:22:53

Thanks so much everyone - so much helpful advice here and I've just spent the last hour or so joining facebook groups and looking through the various links. One thing that seems to be common is the wait for a proper diagnosis which I am a bit nervous of.

The pernicious anemia might be something too - I have been taking almost 500mg of iron for two months, yet my blood test says I am only just scraping the bottom of the 'normal' range.

Bibbidee Mon 24-Oct-16 19:43:09

Get your doctor to check your B12, folate and vitamin D. The amount of thyroid patients who's levels are low is crazy.

Bibbidee Mon 24-Oct-16 19:44:09

Get a print out of your last blood results. You are entitled to them by law.

yellowsquarepostit Mon 24-Oct-16 20:10:05

Pernicious anaemia is b12; it's another autoimmune condition that affects part of the digestive system that absorbs b12. The symptoms can be slight at first then quite mad and bad! But it's sometimes associated with hypothyroidism as all autoimmune conditions sometimes go hand in hand.

You are slightly more likely to get hypothyroidism if you have coeliac disease for example. (Something like 15-20%)

Make sure you're taking the iron properly; with vitamin c and away from other foods.

WinchesterWoman Mon 24-Oct-16 20:23:31

I know you got prescribed it but i would worry about taking too much iron for too long, especially when there are other ways of getting it.
<not a doctor not a doctor not a doctor>

hypothyroidmom.com/10-nutrient-deficiencies-every-thyroid-patient-should-have-checked/ It talks about magnesium, zinc, selenium etc.

It's just a bit of reading. And I'm still not a doctor.

yellowsquarepostit Tue 25-Oct-16 07:50:47

Re reading your OP I do wonder if they were thinking of prescribing you thyroxine depending on how you felt.

I seem to remember that in the nice guidelines but I think they might have been altered slightly.

Perhaps go back to GP and ask for a trial low dose of thyroxine.

Something that I always do/ did and indeed did when I had undiagnosed asthma was minimise symptoms but also as they're there all the time you get used to them. Until you know how it feels to feel better you sometimes don't tune into how bad you are.

Also, insist that your iron is raised to within normal parameters which is over 70, not just a bit higher. I do notice the difference and infact feel rubbish when it's 50.

yellowsquarepostit Tue 25-Oct-16 07:51:26

Are you constipated? Key symptom.

MrsBGharai Tue 25-Oct-16 08:08:33

Sounds like Hashis to me.
I had thyrotoxicosis, wrongly diagnosed as Graves. 2 years on Carbimazole (suppressant), then it was removed.
My TSH was between 20 and 15 for 8 months. Had migraines, still rapid pulse and palps.
Turns out to be caused by a histamine intolerance - I have unusual mast cell activity. It's neurological.
Even at TSH 20 I have hyper symptoms, but generally sleep all day. GPs never ask 'why'?
Endos don't either. I finally have a diagnosis from an allergy specialist!!
You need to get this escalated, and read as much as you can. If ANYTHING doesn't make sense, argue, dispute, print off studies etc.
I self medicate with NDT (GP is aware). It's not available on the NHS, but costs pennies from the country of origin. It's totally legal to buy 'as a supplement'. Levothyroxine doesn't convert for me.

LuigiB Tue 25-Oct-16 14:16:46

Thanks once again - one of the things that is confusing to me is that I don't have normal hypo symptoms like constipation, or dry hair etc, but I do have going to the loo a few times a day (sorry for tmi), a shakey left hand occasionally, flushed face, panic attacks and anxiety and a bit of nausea. Today though I feel 'normal' in that I don't have the flushed/anxiety/nausea feeling - I wished I felt like this all the time.

After doing a bit of digging on the net I can see that having Hashimoto's can cause this if the thyroid is being attacked by antibodies and releasing hormone into the system as the tissue is dying. I've decided to go back to another GP for a second opinion - thanks everyone for encouraging me to not just wait and see what happens.

LuigiB Tue 25-Oct-16 14:18:24

Sorry I also wanted to say that the deficiencies info sounds really interesting - and I'll ask the doctor about that too.

Johnstonbananas Tue 25-Oct-16 14:28:46

I have hypo and I have diarrohea-never constipation. My hair is thinning now but not dry at all. Left hand is a nightmare. So is left leg and some times right leg. Deficient in b12, vitamin d and folic acid. Don't believe all the symptoms online. It's different for everyone. Just go back to your GP asap

MulberryBush12 Tue 25-Oct-16 16:02:49

Hi OP,
I was diagnosed hypothyroid 4yrs ago with a TSH of 10. Like you, my T4 was just in range. I then had a 2nd test, specifically for antibodies, which were v. elevated-can't remember exact figures.

Point being -that I didn't have a 2nd further TFT blood test, 2mths later, before being diagnosed.
I was then started on thyroxine 50mcg.

I couldn't tolerate thyroxine at all, but that's a whole other story of private endo ref and being prescribed T3, having lots of other endocrine tests etc etc etc lots of trial & error.

What I have noticed, having being both hyper and hypo, is that the symptoms of each feel so similar, that I can't distinguish which end of the spectrum I'm at. The GP will tell you that's impossible btw, but I work alongside quite a few colleagues who say exactly the same! For eg I have palpitations & diarrhoea at both ends of the spectrum; the overheated feeling was worst when I was hypo.
So from my perspective, there is a definite crossover !!

Like others have said, B12 & folate, Vitamin D, Iron Stores (Ferritin), Full Blood Count and Coeliac Antibodies are common deficiencies /disorders with autoimmune hypothyroidism. So do ask your GP about those bloods too.
Always make sure that you have your TFT bloods as early as possible in the morning-when TSH is naturally higher. It falls during the day and peaks early hours of the morning. Zero point in having this done later in the day-will just lead to an inaccurate blood result.
Never take any thyroid meds just before TFT bloods either; take your dose immediately afterwards on any empty stomach.
Good luck OP-it's all very frustrating with AI hypothyroidism -persevere and you'll get there. But first you need to change to another GP and don't downplay your symptoms !!

LuigiB Tue 25-Oct-16 19:36:53

Thank you to both of you - it really is helpful to me to see everyone's stories - I keep thinking that my symptoms could add up to everything and nothing iykwim, but I'm going to book another doctors appointment in the morning and really push the vitamin deficiency and also anxiety issues - hopefully I will get someone that listens to me...

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