Need some help understanding this: Hi So I was... - Thyroid UK

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Need some help understanding this

Sweenco
Sweenco

Hi

So I was diagnosed hypo/hashimotos about 8 weeks ago....feeling awful my tsh 11.9 and has antibodies in the 1000s any was I was started on 50 levothyroxine and originally felt worse but started feeling a bit better last few weeks,last few days all my original symptoms have started coming back and I feel like I’m back to square one, Its as tho my body needs an increase.I had my first blood test last Thursday and I just phoned up for my results tsh has down to 4.6 and deemed satisfactory by my doctor WTF?

Can anybody explain to me what’s going on here?

I’ve made an appointment for Friday with him ,any advice would be appreciated 😀

19 Replies
oldestnewest

Your TSH needs to be 1 or lower so yes you need an increase, would also be useful to know your T4 and T3 levels because dosing on TSH is never a good move.

Sweenco
Sweenco in reply to bantam12

Hey

I’ve not spoken to him yet but I’ll find out Friday. He’s not the best to be honest. I feel rotten again after a few days of thinking I was getting better😡😡

SeasideSusie
SeasideSusieAdministrator

Sweenco

Can anybody explain to me what’s going on here?

You have a doctor that is ignorant about treating hypothyroidism. Is your TSH actually now within range? If so that's not good enough, it needs to be much lower. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

Protocol is that tests are carried out every 6 weeks, with increases of 25mcg where needed, until your levels are where they need to be and for you to feel well.

See pathology.leedsth.nhs.uk/pa...

scroll down to

Thyroxine Replacement Therapy in Primary Hypothyroidism

and in the box you will see regarding TSH level:

0.2 - 2.0 miu/L Sufficient Replacement

> 2.0 miu/L Likely under Replacement

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse magazine (the magazine for doctors)

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org print it and highlight question 6 to show your doctor.

If you get nowhere with this doctor on Friday, find another one.

Sweenco
Sweenco in reply to SeasideSusie

Thanks range is 0.4-5.0 I think.

SeasideSusie
SeasideSusieAdministrator in reply to Sweenco

So you've just crept into range and that seems to be enough for your GP. However, it's been explained above that it's not. You need an increase of 25mcg immediately, a retest in 6 weeks, another 25mcg increase, another retest 6 weeks later, and repeat until your levels are where they need to be for you to feel well. If this doctor doesn't do that for you, find another one who actually cares about their patients and understands how to treat hypothyroidism.

Sweenco
Sweenco in reply to SeasideSusie

Thanks susie tho this is the doctor who said my b12-299(200-900) and folate both very low but within their range we’re fine and the same doctor who wanted to retest my thyroid in 3 months even tho my tsh was 11.9 😂

SeasideSusie
SeasideSusieAdministrator in reply to Sweenco

Sweenco

Crikey, I'd run away pretty quickly from this one.

SlowDragon
SlowDragonAdministrator in reply to Sweenco

If you don't get a 25mcg dose increase on Friday you definitely need to see a different GP

You also need vitamin D and ferritin tested, if still not been done

Have you had Coeliac blood test result? Assuming it's negative, doesn't mean you won't benefit from trying strictly gluten free diet. Many of us with Hashimoto's find it extremely helpful or essential

Been started on B12 injections? Or started B12 sublingual supplements and a daily vitamin B complex with folate in

If already started vitamin B complex remember to stop any supplements containing Biotin 3-5 days before any blood tests biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Sweenco
Sweenco in reply to SlowDragon

Hi

My ferritin is always high always has been. Don’t think I’ve had my v D tested so I’ll mention that,I take selenium v-D3 and b-12 tablets.

I tested negative for celiacs and pernicious anemia.

SlowDragon
SlowDragonAdministrator in reply to Sweenco

How much higher is ferritin?.

If marginally above top of range that's not unusual with Hashimoto's. It's probably due to inflammation. Doesn't necessarily mean iron is high

If ferritin is significantly higher, then hemochromatosis needs to be considered

functionalhealthnews.com/20...

redriverhealthandwellness.c...

Vitamin D is very often too low with Hashimoto's so essential to test

holtorfmed.com/vitamin-d-au...

hypothyroidmom.com/92-of-ha...

vitamindcouncil.org/hashimo...

Sweenco
Sweenco in reply to SlowDragon

Ferritin 535 (15-300) has always been around this level for the last 7/8 years in fact all my blood results were much the same 7/8 years apart high ferritin and low folate and b12 and I only recently found out my tsh has been over 5.5. (0.4-5.0) for all these years and I was always told I was borderline and to retest in 3 months even when I had symptoms.

Sweenco
Sweenco in reply to Sweenco

So who knows what damage has been made 😭

SlowDragon
SlowDragonAdministrator in reply to Sweenco

Ask for referral to haematology for persistent high ferritin and evaluation for possible hemochromatosis

Iron overload can be linked to Hashimoto's

High iron can be cause of hypothyroidism too

hemochromatosis.org

cobbsblog.com/and-the-damag...

SlowDragon
SlowDragonAdministrator in reply to Sweenco

Are you now also supplementing to improve low folate with daily good quality vitamin B complex with folate in

Eg Igennus Super B complex or Jarrow B-right

I had a lower TSH than you and similar TPO antibodies. Was started on 25mcg then 50 now 75. My G.P told me they like the TSH to be under 2. Not perfect but better than how you have been left.

Sweenco
Sweenco in reply to floss76

I thought that’s how mine would work aswell 🙄

floss76
floss76 in reply to Sweenco

Can you tell them that other G.P"s in the UK have a different view?

Update...went to doctors today and got my levothyroxine increased to 100 without any problems 😀

Doctor said he treats the symptoms not the TSH.

TSH-4.9(0.4-5.0)

T4-12(0.9-21.0)

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