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Original poster

Hashimotos thyroiditis

16 replies

dani24 · 04/08/2016 00:11

Does anyone know much about the above? I've been given a copy of my blood test results which mean nothing to me.

My GP is waiting until the 11th to retest before he gives me anything surely I shouldn't wait that long. I feel so ill

OP posts:
Davinaaddict · 04/08/2016 12:30

I don't know anything about Hashimotis I'm afraid, but I did get recommended this site - there are loads of people with lots of experience that should be able to help:

healthunlocked.com/thyroiduk

Pleasemrstweedie · 04/08/2016 19:07

Can you out a copy of your results on here and I'll have a look for you.

Original poster
dani24 · 04/08/2016 20:57

Since this my tsh is now 19

Hashimotos thyroiditis
OP posts:
Pleasemrstweedie · 05/08/2016 00:03

TSH way above range, FT4 below range and antibodies sky high. Yes, this is Hashimoto's. You will need to go gluten free to get those antibodies down. Once the attack on your thyroid is under control, you should feel a bit better.

11 August is only a week away, but I would argue against any attempt to make you wait any longer for meds as the diagnosis is so obvious. It would be worth your while arguing for a decent starting dose as well, if you're under 50 and with no sign of heart disease, they can start you on anything up to 100 mcg.

You do however have to bear in mind that Levothyroxine doesn't work efficiently if levels of ferritin, vitamin B12, folate and vitamin D are less than optimal, so you need these tested and you may find you need to workmen them yourself.

Another vote for the ThyroidUK forum at www.healthunlocked.com. That forum is the reason I am well today.

Original poster
dani24 · 05/08/2016 10:25

Thank you for your reply please I did call GP yesterday and he refused to see me before he's had the results from my bloods that they are taking on the 11th, your right though it's only a week away now. I shall talk to him about testing for the vitamins etc if he doesn't automatically do it.

I posted on the forum yesterday had a great reply so far.

OP posts:
Corabell · 05/08/2016 10:31

I agree with everything Mrs twee die advised you to do. It is pretty clear cut that you have hashimotos and your GP seems a bit over cautious by re running your bloods.

Try thyroid uk - they have an extensive list of symptoms that you can look at and you may find that numerous health niggles and problems are listed as thyroid related. I would not down any that you feel you suffer from and you can compare how you feel after you start levothyroxine to see if the dose is helping or needs adjustment.

Selenium is another supplement that can help with hashimoto's.

Do you have any other auto-immune conditions?

Corabell · 05/08/2016 10:33

I notice on this letter that it mentions an IVF clinic. Are you undergoing fertility treatment? Hashimoto's needs to be well managed and under control to conceive and maintain a pregnancy.

Pleasemrstweedie · 05/08/2016 11:39

The NICE guidelines used to say you should have a TSH under 2 if you are planning a pregnancy. They've changed the guidelines now, which is a bit of a bugger, but it's still true.

Until your thyroid is fixed and your vits and mins are optimal, fertility treatment is a waste of time and you may find that once you're sorted you conceive naturally anyway.

Original poster
dani24 · 05/08/2016 14:53

I had a baby last year and all my bloods were fine then except prolactin which went down when they re did the bloods. This was meant to be a frozen transfer which I have now put on hold due to the risks I now have. I have no other auto immune issues that I know of.
How long does it generally take to get tsh sorted? I can't have children naturally due to blocked tubes and same sex marriage.

OP posts:
Corabell · 05/08/2016 16:32

It depends on the person and how they respond to treatment. My tsh was over 100 when I started levo and it dropped significantly then took a lot of fine tuning to feel well. I also didn't do well on levo along and continued to feel symptoms until I added t3 to my medication.

I was diagnosed 9 months after having my daughter who is now 3 and I had a healthy baby 8 weeks ago so if you get your tsh down the prospect of having a baby can be good :)

tootsroots · 07/08/2016 21:36

corabell that is good news as I have been diagnosed with severe hashimotos pp with tsh of 103 when he was 7 months . My tsh dropped to 4 on 125mg but I still feel shocking 😡 Main issue is swelling and painful joints - crippling so . Desperate for dc2 but scared I can't conceive!

Interesting about gluten as consultant said it was a myth....

Davinaaddict · 08/08/2016 13:08

Keep reading the Thyroid forum, as they have great advice, especially about results and at questions to put to GP's and specialists Smile I agree with the vitamins tests etc, as they can also make you feel rubbish if they're not optimal (and not just in range!).

My TSH was last tested at 4 toots and it was totally dismissed, despite me feeling completely awful Sad The doctors are insisting that it's chronic fatigue syndrome instead Hmm

Hope you manage to get yours down and feel better soon.

Corabell · 09/08/2016 12:56

In my opinion 4 is still too high for day to day living. I only feel well when my tsh is less than one and I take t3 ( liothyronine) as well as levothyroxine. toots have you been referred to an endocrinologist? If not, can you ask to be referred on the grounds that you still have symptoms and that you wish to plan a pregnancy?

A tsh of 4 is too high for pregnancy my endo wanted my tsh to be maintained at less than 1 during my pregnancy and adjusted my dose accordingly. The foetus requires thyroxine to cross the placenta for the first trimester.

One book which might help your case is "understanding thyroid disorders" by Anthony toft. Toft is a retired endocrinolgist who was is well thought of by endos and in one part of his book he writes that some patients may feel well with a surpressed tsh and/or with the addition of t3. As he's part of the establishment his opinion carries some weight among gps and endos.

Corabell · 09/08/2016 12:59

PS my joint pain was agonising. Vitamin d, b12 and iron supplementation helped by the pain only reduced when I started taking liothyronine.

aspidistraah · 09/08/2016 17:43

Definitely get the toft book.

I'm pretty sure the nice guidelines say to treat if there are antibodies. I think the frustrating thing can be that the thyroid can respond to the attack by growing and so bringing down the Tsh/ making more t4/t3. So thyroxine could push you into a hyper state. (I do know someone this happened to). I think this is why the upper limit is around 10/11. However, 17 is basically Underactive.

Another v good source of info is the British thyroid foundation (you can ring volunteers).

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