New here - help needed

[Izzys-Mum]

Back story, I have a chronic blood disease which is now controlled well with interferon. I should be feeling good but I'm not (one of the side effects of interferon can be that it has an effect on the thyroid). The blood disease and thyroid problems seem to have a lot of similar symptoms I'm especially suffering with fatigue and breathlessness amongst others - it's debilitating, I'm not living I spend most of the day laying down.

My haematologist is very proactive and had my thyroid tested twice this year and now recommends my GP investigates clinical hypothyroidism.

I don't really know what the results I have mean: May 2022 - TSH 5.23 T4 11 Sept 2022 - TSH 6.72 T4 12.5

For info I'm 64 and weigh 60kg. I have GP appointment Monday.

My questions (I'm asking here as I believe the experience of people living with this disease have the most knowledge) what should I expect my GP to do for me? What medication and dosage would be usual for someone with my results?

I'm just so fed up with feeling rubbish and really need help from the experienced people here, so I don't get fobbed off at the GPs.

Thanks

[Jaydee1507 Administrator]

Welcome to the group.

So it looks like you have whats described as sub clinical hypothyroidism. Your TSH is likely above the reference range, although you haven't given the actual reference ranges for either test. This would be useful to see as they can vary from lab to lab.

In the UK the recommendation is not to treat until the TSH reaches 10+ however you will be experiencing many symptoms well before that as you probably are now. How are you?

Some doctors might do whats call a trial of treatment before that, which is really just a euphamism for covering their backs. So you may or may not get treatment from your GP depending on how bold they are. You do need treatment though, it's just how the ridiculous NICE guidelines have been set.

As hypo people we get low stomach acid which means we can't absorb vitamins properly. You likely have some low vitamin levels so its worth testing ferritin, folate, B12 and D3 levels.

[Izzys-Mum in reply to Jaydee1507]

Thanks for the detailed answer. I have a lot of research to do this weekend prior to GP appointment. Thanks

[PurpleNails Administrator]

Your TSH.  Thyroid stimulating hormone is a pituitary hormone which signal thyroid to increase / decrease.

Yours is high which often means thyroid hormones are low & the signal is telling thyroid to work harder.

The thyroid produces 2 main hormones,  mostly Thyroxine or T4 and a tiny quantity of triiodothyronine (T3) some T4 is also converted to T3.

The Free unbound T4 & T3 are are important measures, as TSH can be unreliable but it’s the TSH doctors tend to focus on.

You have 2 FT4 readings 11 & 12.5 

Do you have lab reference range? 

FT4  look low.  (Ranges vary between labs so either low / under range) 

Doesn’t look like FT3 has been tested.  NHS rarely test it. (Some test privately to check)

 Some GPs are open to treating once thyroid is struggling,  other believe no treatment necessary until TSH reaches over 10 or FT4 under range.

GP might be influenced by the advice / instruction from the specialist.  

For full thyroid test you need 

TSH

FT4

FT3

Thyroid antibodies - TPO & TG antibodies 

Also important to test - 

Folate

Ferritin 

Vitamin D

B12

For consistent testing it’s best to book early blood draw.  Fast overnight (drink lots of water ) if you take any supplements containing biotin leave off a few days before test - longer if high dose.  Biotin can skew results.  

If thyroid levels  low / TSH high replacement will be necessary you’ll usually be started on 50mcg of levothyroxine.  As you are 60 & have other health concerns Dr may be cautious and start you on 25mcg.  After every alteration it’s important to repeat test 6 -8 weeks later.  

[Izzys-Mum in reply to PurpleNails]

Thanks for replying, unfortunately I don't have lab ref range. I understand why the GP maybe cautious so this info will help me.

[PurpleNails Administrator in reply to Izzys-Mum]

I’d recommend that anyone with thyroid issue or any health condition keeps their own record of FT4 & FT3 (and other tests) keeping track will help you know of you are on the right level of replacement & treatment of other conditions.  

You have a legal right to your results.  Ask practice receptionist for a printout of results with lab ranges (ranges vary between labs so essential).  Do not accept verbal or hand written results (or in a typed emali). 

 I have online access.  Which is ideal & useful as include notes & letters.  (if in England, practices mandated to provide).  I now keep my own copy of records.  eg screen shots.  

[SlowDragon Administrator]

With two thyroid tests with TSH over 5 and symptoms you should be prescribed levothyroxine

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Request GP test vitamin D, folate, B12 and full iron panel test for anaemia

Plus test thyroid antibodies for autoimmune thyroid disease

Breathlessness is often linked to low iron/ferritin

[Izzys-Mum in reply to SlowDragon]

Good advice I'll be sure to ask my GP for these tests - thanks for attachment I'll go through that too. Thanks

[SlowDragon Administrator in reply to Izzys-Mum]

Haematology presumably regularly test iron/ferritin and B12 and folate?

Add any results and ranges if you have them

Ideally starting on 50mcg levothyroxine

Avoid starting on Teva brand unless you know you are lactose intolerant. Teva brand upsets many people.

[Izzys-Mum in reply to SlowDragon]

I usually only have U&E, LFT and full blood counts every 3 months but notice on next blood test form (Feb) asking for Thyroid test, also B12, foliate and ferritin also states TSH monitoring.I'll make sure to keep well clear of Teva (don't need any more problems lol).