Dr. Said she's never seen this: My tsh was 1.8... - Thyroid UK

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Dr. Said she's never seen this

Mandavb84 profile image
16 Replies

My tsh was 1.84 before starting levoth at 25mcg and now it's 4.2. She's switching me to synthroid 50mcg. Not sure what happened there, she said it's so weird to her, but I hope the change helps! Any insight?

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Mandavb84
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16 Replies
Nanaedake profile image
Nanaedake

Why did your doctor start you on Synthroid when your TSH was 1.84?

Mandavb84 profile image
Mandavb84 in reply to Nanaedake

Good question. She said it wasn't optimal bc I was having symptoms like inability to lose weight, Unidentified rash, extreme fatigue. I asked her to test my adrenals and she said one thing at a time and won't even do the blood work. She wants my thyroid at .5-1.0

Mandavb84 profile image
Mandavb84 in reply to Nanaedake

Also, it was fluctuating between 1.84 and 2.8 and I have inflammation in my thyroid

Nanaedake profile image
Nanaedake in reply to Mandavb84

Have you had thyroid antibodies blood tests? If so, could you post the results here along with your thyroid blood test results and the laboratory ranges and then it will be easier to understand what is going on and people can give good advice.

Mandavb84 profile image
Mandavb84 in reply to Nanaedake

I'll try to get the exact numbers, but I was told my antibodies were fine. Just have that my levels are 4.2 right now and they were 1.84 prior to levo.

Without your antibodies results we can't identify if you have Hashi's - and with Hashi's your thyroid levels will have these "flares" where levels will fluctuate as the throid gland declines. The flares are temporary and fairly common, but your GP clearly is unaware of this. (We see a lot of that here unfortunately!)

Mandavb84 profile image
Mandavb84 in reply to

I was told my antibodies were fine and I do not have hashi's

SeasideSusie profile image
SeasideSusieRemembering in reply to Mandavb84

The proof is in seeing the results for yourself, no just taking your GP's word for it. In the UK we have a legal right to a copy of our results. Not sure where you are, but you need to see them, either in print or on the computer screen.

silverfox7 profile image
silverfox7

A rash could mean that you are allergic to the fillers.

Mandavb84 profile image
Mandavb84 in reply to silverfox7

The rash was prior to treatment

silverfox7 profile image
silverfox7 in reply to silverfox7

So you had this rash for a time then? It still could be an allergy to something else. If you still have it take an anti histamine one hour before anything else in the morning and see if that helps. If it does you need to work out what is upsetting you as inflammation doesn't help.

greygoose profile image
greygoose

The fact that you were told you don't have Hashi's, doesn't mean anything. Your doctor obviously doesn't know very much about thyroid, or she would know why your TSH has risen. It's often a problem with small starting doses. 25 mcg is enough to make your thyroid stop producing hormone, but not enough to replace it.

Imagine your thyroid was producing 40 mcg T4 a day (made up number, but given your TSH to start with, your gland was probably producing a fair amount). You start taking 25 mcg. Your thyroid, sensing the exogenous source of hormone, stops producing hormone. So, instead of your dose of 25 mcg bringing your total daily T4 up to 65 mcg, you are now just on 25 mcg a day. So, you have effectively had a reduction in T4 of 40 mcg a day.

The normal starter dose is 50 mcg, which is more realistic - unless you are very old and frail or have a heart condition. It would have been interesting to see what your TSH was after six months on that.

You say that your TSH varies from 1.84 to 2.8, are the tests always done at the same time of day? If not, I think you need to see your antibody numbers for yourself. Besides, one negative test does not rule out Hashi's, because antibodies fluctuate wildly. Plus, there are two different types of antibodies. Did you have them both tested?

Also, you need to have your FT4 and FT3 tested. There are two possible reasons why you were having symptoms but had a reasonable TSH :

1) if your Frees are low (FT4 and FT3) but your TSH not high, you could have a pituitary or a hypothalamus problem - Central Hypo - where there's nothing wrong with the thyroid itself, but it isn't getting enough TSH to stimulate it to make more hormone.

2) if your FT4 is high but your FT3 is low - TSH can be anywhere - you have a conversion problem.

But, you won't know about either of those unless the Frees are tested. Hence the reasons for not just testing TSH. We need comprehensive testing to get the full picture. :)

Mandavb84 profile image
Mandavb84 in reply to greygoose

Awesome information thank you so much. I asked her to do more tests and she said she only wants to tackle one thing at a time and see how I do on 50mcg. I also have ovarie issues and fibroids so I told her I thought it was a pituitary issue. I have inflammation problems, poor immune system, sever constipation, dryness all over. Can I get tests done for my pituitary gland? I'm so bummed. This endocrinologist is supposed to be the best, but I'm seeing her assistant.

greygoose profile image
greygoose in reply to Mandavb84

Without seeing your FT4 and your FT3, you cannot know if you need to test your pituitary. Your doctor really is very ignorant. She should have tested those before she put you on levo. Wants to tackle one thing at a time! Pft! Doesn't she realise it's all connected.

When you say 'ovary issues', do you mean PCOS? Fibroids are a hypo symptoms, and I think PCOS is related, but not quite sure how. Constipation and dryness are also hypo symptoms.

I'm not aware that you can get pituitary tests privately. But, have a look at the private test information on the Thyroid UK main page. You might find something there.

Mandavb84 profile image
Mandavb84 in reply to greygoose

Yes I get frequent cysts. I will check to see if she tested my FT4/3. Thank you! I think I'll do better on the 50mcg and she switched me to synthroid. No generic

greygoose profile image
greygoose in reply to Mandavb84

You're welcome. :)

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