why is TSH so high?

[Suffolklady]

I am still on a bit of a rollercoaster. I have 8 week blood test to see the changes of my thyroid function. I was diagnosed with Graves disease quite a while ago. I take 5 mg of carbimozole every other day as prescribed by the endocrinologist as taking it every day made my thyroid function on the verge of hypothyroidism. I’ve been on the reduced amount for about 5/6 months now. I was taking 5 mg every day before that it and higher when I was well into the Hyper range. The last two readings are very similar I’ll put the latest one down below. It was taken on the 13th of February so very recently.

TSH 4.59 (0.27-4.12)

FT4. 21.9. (12-22)

FT3. 5.5. (3.1-6.8)

My question is why is my TSH so high? It’s been like that since last May before that it was always 0. something but it started to creep up and even got to 6.6 at one point. I don’t understand why this has changed and what it means. The endocrinologist doesn’t seem to worry about that. I don’t feel well haven’t done for a long time could this be one of the reasons why I feel very hormonal? My moods are very up-and-down I have weakness in my legs, breathless and something, I’m not sure if it is linked but I did read somewhere, my taste has changed can’t tolerate sweetness it leaves a funny after sensation and taste in my mouth which is very unpleasant. I do suffer from dry mouth which has got worse than the last six months or so. I have had to go back on prednisolone last October again as I had a PMR flare.

As far as all of my other results are concerned I have had vitamin D checks which is normal. Ferratin and folate were low, but I am on medication for that started six months ago, have a check in March.

[GlowCoach Administrator]

This is strange so I will tag PurpleNails who understands Graves well.

What about your B12 test result?

Exactly what was your Vit D result?

[Suffolklady in reply to GlowCoach]

It wasn’t taken this time but I will check. My Vit D is well over range I’ll check up B12 though.

[GlowCoach Administrator in reply to Suffolklady]

How much vit D are you taking?

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...

[Suffolklady in reply to GlowCoach]

I take one tablet of 2000 per day vit D do this over every winter. I also take igennus super B complex as suggested on this site I think I’m not sure, but been taking this for a long while. My B12 is 547 range 197.00-771.00 so ll good there.

[GlowCoach Administrator in reply to Suffolklady]

I'm surprised your Vit D is over range on 2,000iu per day. What was the result?

If you get a chance to get an active B12 test then so much the better, as serum B12 isnt the full picture.

Some people can get away with just 1 igennus tablet but not ll. It can leave folate on the low side.

[Suffolklady in reply to GlowCoach]

I don’t know what it is I can’t find the paperwork. But I looked and it was within a good range without of vit D but I took them anyway as my husband took them. When I say well over the range I’m saying what I remember at the time is it was not low end but well up on the range started so upper end.

I was on one igennus but then saw to take two so I started taken a second tablet. I am only scheduled to have a 6 monthly blood on this and that’s due in March. I’m not dizzy as I was but my ferritin was very low.

[pennyannie]

Hey there again :

If your endo is not concerned about your TSH - I don't think you should be -

You were initially diagnosed hypothyroid and placed on T4 Levothyroxine some years ago - and taking steroids which we know can distort TSH readings -

You were then diagnosed Graves and been on various AT drugs over years and I thought still on Block & Replace - anyway -

On paper these last results of T3 and T4 look good - I'm just sorry you are still unwell -

The body naturally produces thyroid hormones every day -

so I suggest you chop the 5 mcg Carbimazole into 2 and take the same dose every day to follow the natural rhythm of your body.

Did you manage any of my targets that I shared with you for ferritin, folate, B12 and vitamin D ?

[Britpol]

Hello,

I really feel for you. It seems your body has reacted to the higher dose of carbimazole with some delay and when your doctor reduced the dose , it was too late , it already started on a trajectory of going into a hypo mode. I have read that, sooner or later , you do end up being hypo after treatment with carbimazole, if you have taken it for a length of time. One thing to address is your lifestyle- do take time to look after yourself . Slow down, do pleasant things, research supplements . Stress is a huge factor in thyroid disease and doctors don’t know how to treat it, but there’s a lot you can do to help yourself and contacting this forum is one of them. Stay positive!

[Suffolklady in reply to Britpol]

I take on board what you say if I took it any slower I’d stop. Winters not good for me hopefully spring and summer might make me feel better.

[PurpleNails Administrator]

It’s unusual to see high FT4 / FT3 with rising / high TSH.

Initially I was thinking could this be lab test interference. This can be seen with use of supplementing biotin close to blood test causing skewing results or antibody assay interference.

When were thyroid antibodies last tested?

You could check to see of a new lab or new lab equipment was used on test & ask for different set up to be used to compare results.

Looking at some of your previous posts though you do have complex medical history. Many years ago you started on a low dose levo but couldn’t tolerate it.

Do you recall if during that time your FT4 & FT3 was tested, it might have been that Dr was looking at TSH and not frees.

TSH & thyroid levels mis-match isn’t unusual but it’s usually low TSH & Frees. Its the FT4 & FT3 which affect symptoms. I’d not feel optimal with borderline FT4 & high FT3 although many do feel well it’s an individual thing. I’d be inclined to increase carbimazole to lower your FT4 & FT3 you may find your TSH rising further but if in focusing on levels & symptoms this might help. Would drs agree? I find if levels are in range drs don’t like to alter doses & prefer to go by TSH & not frees.

You would expect to see undetectable TSH & the fact it’s above range with high frees makes me think Drs might like to investigate pituitary hormones & check if other pituitary hormones are in range & rule out potential issues.

[Suffolklady in reply to PurpleNails]

Firstly yes I stopped the complex a good week or more before test so no interference. Not easy to challenge the dr. I see one next Tuesday a GP at my practice I can ask questions there. The Endo sorts out the forms from my hospital so the bloods are taken at GP and sent to the hospital Labs. Don’t think it’s much point in seeing how the test results are set up it the way the lab does it won’t change it for me it is what it is.

Antibodies are regularly checked. When I first had thyroid checked when you are talking about with levothyroxine it was controlled by the GP and he used to go by TSH not T3 and T4 then I was referred to Rheumatologist for PMR and on steroids which then becomes a endocrine concern with adrenal function. The endocrinologist saw my levels of thyroid etc and became involved with this and obviously was more thorough.

I just wondered why my TSH suddenly changed.

1st March 24 with 40 carbomozole from 5th Feb

T4. 27.7 (12. - 22)

T3. 6.0( 3.1 - 6.8)

TSH 0.01

27th March 24….. in clinic at Ipswich Hospital stay on 20mg Carbamozole

Blood test after 8th May 24

TSH. 1.33

Free T4. 17.6 (12-22)

8th May 24

Free T4 17.1 (12-22)

TSH 5.52 (0.27- 4.20)

July 2nd 24

Ft 4 17. 1

TSH 7.4 (0.27-4.20)

Reduced to 5mg Carbamozole.

Sept 3rd 24

TSH 6.6 (0.27-4.20)

FT4 19.5 (12.22)

T3 5.6

Reduce Carbamozole to 5mg every other day

Iron level on 9th September 24

Ferritin (18) now 39

Folate (3.3) now 6.5

This is being addressed

17th December 24

TSH 4.12 (0.27-4.12)

FT4 20.7 (12-22)

T3. 5.3

That's the last year where the changes occurred

[PurpleNails Administrator in reply to Suffolklady]

Many factors affect TSH and your was lower but it doesn’t look like this isn’t the first time it’s risen and your frees haven’t been significantly low.

Discuss with your doctor & aim to go by FT4 & FT3. TSH is unreliable for many.

[silverbelle51]

Possibly you are not converting T4 to T3 . It is something that occurs frequently that doctors generally don't consider because it is so easy just to increase your dose of replacement