Advice 😫😫😫😫: Can anybody help?! Hi all, I... - Thyroid UK

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williamsad19 profile image
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Can anybody help?!

Hi all, I was finally started levothyroxine last November after having a raised TSH of 7 for a while and low T3 and T4. Started on 50mcg

TSH retested in January and it was 4.9 (0.2 - 4.2) T4 16.9 (11-25) so upped to 75mcg

In March

TSH 0.01 (0.2-4.2)

T4 20.9 (11-25)

T3 of 6 (3.1-6.)

GP wanted to lower me to 50mcg again, I said no as I still felt unwell and my T3 and T4 were perfect. So compromised on 50mcg and 75mcg alternating and also went gluten free, cut dairy dramatically and started the adrenal plan by izabella wentz as I had a feeling this is autoimmune.

In may on 50/75 alternative - results were TSH 12.15 (0.2-4.2)

T4 12.8 (11-25)

TPAG 285 (<30)

Now I’ve been on 100mcg for 8 weeks and my TSH is 0.03 and my T4 is 35 (11-25)

I feel helpless now and so fed up and my GP has now put me back down to 75mcg 😡😡😡😡 also I have started ferrous fumerate again as my ferretin was 12 (15-300.) then they stopped me at 28!! So I’ve asked to restart. Also my multivitamin contained a very small amount of biotin, could this of had an affect?

It’s fluctuating so much! I feel rubbish!

I'm so confused and not sure what the GP will do now as they aren't the best! I’ve asked for an endocrine referall. Advice????

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williamsad19
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Nanaedake profile image
Nanaedake

Biotin can affect results of thyroid tests. A multivitamin is not the best thing to take. If it contains iron, you won't absorb the other vitamins in the mixture. Do you always leave 4 hours between levothyroxine and taking supplements? Are your thyroid tests always done first thing in the morning and fasting? Have you been tested for thyroid antibodies? I've just noticed you have got antibodies meaning you have thyroid autoimmune disease otherwise known as Hashimotos so that may explain the fluctuating results although there could be other reasons too, as suggested.

Judithdalston profile image
Judithdalston

Do you know you have Hashimoto's disease with thyroid autoimmune antibodies ( presume you do as gone gluten free)- the antibodies attack the thyroid gland periodically mistakenly believing it to be 'alien', resulting in dead cells along with their thyroid hormones being dumped in your blood stream? Thus you get fluctuating peaks and relative troughs of thyroid hormone that confuse many Gps as you appear hypothyroid one week, hyperthyroid the next. Hashimoto's may account for your fluctuating results , plus your Gp's chopping and changing 'meds' probably worried by the low, below range, TSH. Hashimoto's is characterised by poor gut absorption and low nutrient levels- worth getting your VitD, B12, and folate tested as ferritin was so deficient, as optimal levels in upper half of ranges are need d for good thyroid health/ T4 to T3 conversion. If doctor won't do it, and sounds like he/she won't do a private test thru Medichecks or Blue Horizon labs ( special offers on Thursday to buy, don't need to do test yet), post results here, and supplement ( a DIY job including much more ferrous fumerate). Multivitamins are useless- look at SeasideSusie's replies to posts re Vit/ min levels, doses and brands of supplements.

SlowDragon profile image
SlowDragonAdministrator

Your GP is adjusting dose too much and by too large a change

75mcg daily was perfect....as you said

You also need vitamin D, folate and B12 tested

Getting these and ferritin at optimal levels is essential

Ask Gp or test privately

Just vitamin D

vitamindtest.org.uk

Medichecks or Blue Horizon if want all three tested

With Hashimoto's you don't want to take a multivitamin. They usually contain iodine which is best avoided

drknews.com/iodine-and-hash...

williamsad19 profile image
williamsad19

Thank you everybody, yes I kind of guessed it was hashimotos although when I said it to the GP she said “not necessarily” 🙄 my b12 was mid range and can’t remember if they tested folate and vit d but I’ll check!

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