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Thyroid issues?

15 replies

ClientQ · 30/04/2020 14:28

So I've been hit out the blue with a letter today after some bloods!
It says positive thyroid peroxidase antibodies found and TSH slightly raised at 7, free t4 is 11.4 and suggests "considering" a referral
What should I be expecting? I have a host of autoimmune conditions so am quite used to them Grin (I also have anti neutrophil antibodies so am under haematology)

OP posts:
Wireless77 · 06/05/2020 19:05

You might get diagnosed with Hashimoto's (autoimmune thyroiditis). Since your TSH is raised, you'll most likely be put on Levothyroxine. It usually starts with a low dose and your levels will be monitored every 6-8 weeks via blood tests until they are within a normal range. Advice for when trying to conceive - TSH should be ideally under 2.5 though the upper range otherwise is around 4 to 4.5. I'm a fellow sufferer, took years to get diagnosed. It's been a few years now, I've found my optimal Levothyroxine dosage and I'm feeling the best with my TSH around 1.

CrunchyCarrot · 13/05/2020 07:56

That TSH is more than 'slightly' raised. Ideally it would be around 1.0. That means your thyroid is struggling, the antibodies mean Hashimoto's, an autoimmune disease that cases your own antibodies to destroy your thyroid over time. Since you already have other autoimmune diseases unfortunately it's quite common to get more. Your FT4 is very low and ideally they'll put you onto Levothyroxine straight away for a trial, which will replace the thyroid hormone your body cannot make enough of. Levo (or T4) is the inactive form of the hormone and your body will (hopefully!) convert it into the active T3 form. Not everyone's body is so obliging, but let's hope yours is. Smile If you start to feel some relief, as the poster above says, your dose will be raised gradually until your symptoms are gone. Unfortunately doctors often monitor by TSH alone and may decide you are 'fine' even though you still have symptoms.

I have Hashi's (diagnosed 4 yrs ago with a TSH of 4.95). I cannot get much benefit from Levothyroxine as I don't convert well (shown by having a high FT4 level but too low FT3 level). I now self-medicate but that should be a last resort and hopefully Levo will suit you. You can find out so much more on the Health Unlocked site - find the thyroid section.

ClientQ · 06/06/2020 20:45

@CrunchyCarrot this thread fell off my list!
Bloods repeated, TSH 7.2 (I went in the morning and fasted Wink) and T4 11.1
Second GP was much nicer and said my T4 has been dropping over the past few years, didn't give any diagnosis but has started me on 25 of levo to be reviewed in 6 weeks and tapered up

OP posts:
CrunchyCarrot · 06/06/2020 22:44

@ClientQ Glad your GP is at least giving you a trial of Levo! I hope it all goes well for you. Smile

ivykaty44 · 07/06/2020 06:09

7.2 slightly raised - that’s really an understatement, it should be at least under 4, I doubt 25mg will make that happen

Have you got a referral to endocrinologist?

EarringsandLipstick · 07/06/2020 06:37

25mcg is a tiny dose! Essentially sub-clinical.

I agree w pp, you really need to see an endocrinologist.

ClientQ · 07/06/2020 10:59

@ivykaty44 nope, the first GP said no need and refused the referral immunology asked for as said it's not needed and I had to argue for a retest
Second GP didn't mention it and I was so pleased she actually suggested levo I forgot
My haematology guy has written a letter suggesting a referral so that's two consultants that have asked now... (I have autoimmune neutropenia and am under haematology)

OP posts:
ClientQ · 07/06/2020 11:00

Posted too soon! She has said they will redo bloods and review in 6 weeks 🤷🏽‍♀️

OP posts:
ivykaty44 · 07/06/2020 11:06

It’s normal to retest in 6/8 weeks as thyroxine is stored in the body, see what your TSH is then and if it’s not under 4 then do try hard to get a higher dose or a second opinion would be my opinion as a lay person

ClientQ · 07/06/2020 11:08

@ivykaty44 I am stubborn enough after the fight to get on the shielding list (consultant had to ring them 4 times) so I will push and push. I'm also quite happy to point out I'm 5ft 10 and heavy so I need a higher dose Wink I suspect I'll need more and I read it should start at 50 anyway
Will make sure it's the second doctor I have a follow up with as well as she listens

OP posts:
Ellapaella · 22/06/2020 17:46

@ClientQ hope you don't mind me resurrecting your thread..
I just wondered how you were getting on with your levothyroxine?
My TSH has been climbing slowly since last summer.
Last check in May it was over 10 (think about 11. Something) - free T4 right at the bottom of normal and I have very high levels of antibodies.
I didn't think I was having symptoms but my husband pointed out I am always saying I'm knackered and going to bed at 9pm (very early for me), my mood has been quite flat for a while and I've been having problems with dry and itchy skin. Also my periods have gradually become longer and longer (don't know if related) and my migraines have come back.
I would say I spend two weeks out of four feeling generally under the weather and not quite right.
I can still summons up enough energy to go running, it's just some days I'm too tired to do anything by the time I come home from work but it feels more like inertia than exhaustion if that's makes sense?
Anyhow I'be just started on 25mcg of Levo and my GP fully anticipates that will be increased after 6 weeks.
Was just wondering if you were feeling any better since starting?

Ellapaella · 22/06/2020 17:48

Sometimes I feel like a fraud as I thought I should feel dreadful but I don't know that I do? Other than what I've mentioned above.

QueenCT · 22/06/2020 18:50

@Ellapaella feel no different at the minute! I'm still shattered and heavy periods but 25 is a low dose and they said they're expecting to have to taper it up

QueenCT · 17/07/2020 16:25

Update
T4 up to 15 but TSH remaining at 7. Levo increased to 50

QueenPaw · 14/05/2021 00:38

Thought I should update this! My levo was increased to 75 after a slight battle discussion
I basically said look if my TSH drops a bit, is that bad? He said no. So I said well, up my levo then!
They did, and TSH now at 1.3. I don't feel any different at all but I have so many autoimmune conditions Sad

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