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Me Again! Blood Tests after Told to STOP Levothyroxine

Me Again! Blood Tests after Told to STOP Levothyroxine

Hi, Me again 👋 Sorry to post again this is my little safe place during this fight.

Basically my old Doctor told me to Stop Levothyroxine because my TPO Antibodies were High and TSH low. You can see previous results if you look on my profile at old posts well I got a new Doctor and they put me on 25mg and I got my recent test results.

They didn’t test my TPO but did T4 and TSH and I cried mostly because what I said would happen has happened look at my TSH now after halfing the dose let alone if I had totally stopped like my previous doctor wanted! Is it OK to admit how absolutely shit Ive been feeling 😳

I’ve got an ultrasound next week and meeting an endocrinologist next month. Just wanted some help to get things sorted as were trying to start a family and nobody until now had taken this seriously!

11 Replies
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So you are now profoundly hypothyroid. At least they have to accept and treat you properly now

Have you seen GP? If not make an urgent appointment and get dose increased by 25mcgs. Retesting in 6-8 weeks.

Dose should be increased by 25mcgs steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Are you on strictly gluten free diet as advised in previous posts

You have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

Most with Hashimoto's find it essential to be strictly gluten free (see lots of links in your old posts)

Your vitamin D was too low in last post

Are you supplementing? If so how much

Ask GP to retest folate, ferritin, B12 and vitamin D

Obviously good levels of B12 and folate are essential for conception

TSH needs to be under 2.5 according to NICE for TTC

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MillieMuffin,

I would make a complaint to your previous GP's practice manager. GP should have reduced dose if s/he thought you were overmedicated not stopped Levothyroxine. High antibody levels are not a sign of overmedication. That GP needs some re-education.

It's not surprising you've been feeling awful. Your dose needs increasing from 25mcg. GP could increase to 75mcg - 100mcg. There's no need to retest TPO if you've previously had high results.

You should consider delaying starting a family until TSH and FT4 are normal as high TSH and low FT4 increases the risks of developmental damage and miscarriage.

The TSH of women planning conception should be in the low-normal range 0.4 - 2.5. When pregnancy is confirmed dose is usually increased by 25-50mcg to ensure good foetal development. NICE also recommends that hypothyroid women planning pregnancy should be referred to endocrinology. cks.nice.org.uk/hypothyroid...

Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee

13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).

onlinelibrary.wiley.com/doi...

According the ATA First Trimester TSH levels between 2.5 and 5.0 are associated with increased pregnancy loss

thyroid.org/patient-thyroid...

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Your Doctor is obviously ignorant about the thyroid. Your TPO antibodies are high because you have autoimmune thyroid disease (Hashimotos), not because you are overactive. Your TSH is low because you are on levo or because your dying thyroid just dumped extra hormone into the blood stream (Hasi flare). What matters is your free T4 and free T3. You need to see another doctor with a clue as this one is making you very ill. Often being gluten free and supplementing selenium can help stop flares as can keeping TSH as low as possible!!!

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It makes so much more sense when people explain it like this with regards to dumping the extra Hormone, Why can Doctors not understand that! It makes so much more sense seeing it written like that would explain my last results. I had been driving myself crazy I have one Doctor saying 50mg is too much medication and another saying 25mg is not enough medication yet nobody has explained why or what might be happening!

I have had an Ultrasound today which has confirmed my Thyroid is very inflamed.

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Low TSH and low T4 heavily indicates central hypothyroid if your not taking any thyroid meds

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reallyfedup123

MillieMuffin's TSH is 72.91, which by anyone's standards is very, very high. Central hypothyroidism isn't relevant in this case.

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Millies post says doctor told her TSH low

I totally agree TSH of 72.91 is off the charts and her GP should be struck off

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My TSH was 0.05 the months before these results this is why she said it was low and wanted me to stop medication claiming I was Just over medicated. The new Doctor ran bloods and that is when it came back 72.91 because my old Doctor seems to be a total idiot. I actually hate her, Infact I cannot explain my hate for my previous doctor almost 2 years of being fobbed off and told to come back in 6 months to SEE WHAT HAPPENS. The final straw for me was when she told me to Just stop taking any medication for 6 months to see what happens... I think she is trying to kill me off with that sort of a suggestion!

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Dead right ...she has no business being a doctor ...anyone on levo should never ever be told to stop medication or drop their dose by more than 25mcg its criminal

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If it was not for groups like this, I would think to trust her and think she was right! Instead it's always made me question her actions and I am disgusted with the way she has treated me and I am going to make sure a complaint goes in. When I first started getting a nasty cough and sore throat and her outstanding advice was "Oh well, try to take your medication with Yogurt to sooth your throat"....

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I would advise you that a complaint will be counter productive ...much though it pains me to say so the repercussions are simply not worth it ..just culture the doctor who is helpful and help them to understand the wider effects of hypothyroid

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