At my wits end with being told my TSH is normal

[nw1991]

Been to see my thyroid specialist as I do every 3 months and I’m totally at my wits end. I’ve gone from 9.5 stone to 13 stone. In the past 3 months I’ve put on 7kg according to hospital records which is crazy considering I follow a strict diet and exercise regime. My tsh is normal, my b12 is managed as is my vitamin d. Why is my weight gain creeping up and up so rapidly? I have all the symptoms of under active - cold, fatigue, muscle and joint pain, no energy. Not sure what I can do to feel like the old me again. My bmi is putting me in the obese category and I’m worried about my health. I had a thyroid scan which showed nodules and a cyst but the specialist advised it’s normal and nothing to worry about. Ever since I went on carbimazole I’ve gained weight. When I stopped the tablets I was told my body would return to normal and this just hasn’t happened.

Attached blood results for reference. Specialist is testing my t3 this time so I will have recent results next week.

[SeasideSusie Remembering]

nw1991

Are they testing FT4 and FT3 as well as TSH, if not they should be.

Why were you put on Carbimazole? That is for Graves disease (overactive thyroid) which should be confirmed by testing TSI and TRAb antibodies.

You have Hashi's, Carbimazole is the wrong treatment. Hashi's is underactive thyroid with fluctuations of symptoms and test results as and when the immune system attacks the thyroid and you can swing from hypo to "hyper" and back again randomly.

Your symptoms suggest you are hypo and need Levothyroxine, regardless of your TSH. You need FT4 and FT3 testing to see where your actual thyroid levels lie (TSH is not a thyroid hormone, it's a signal from the pituitary to the thyroid).

SlowDragon gave you information about what tests are needed in your previous thread here:

healthunlocked.com/thyroidu...

It would help if these were all tested and you posted results, along with any supplements you take to "manage" your B12 and Vit D, plus anything else supplement/medication-wise.

[nw1991 in reply to SeasideSusie]

Hi SeasideSusie!

Thanks for always replying! They aren't testing T3 & T4 and i begrudge having to pay privately for these but I will have to start doing so. I've been given a great link below for an affordable test so i will start to do these myself. I have no idea why they put me on carbimazole, they initially diagnosed me as hyper as i lost a lot of weight and had all of the hyper symptoms, and then i seemed to swing hypo very very quickly. I take B12 injections managed through my doctor 2 monthly, i take the betteryou oral vit d and k mouth spray daily and the ingennus b12 tablets. I must admit anything else like magnesium etc i struggle to be consistent with.

I'll do a private test and post my results soon.

[SeasideSusie Remembering in reply to nw1991]

Magnesium helps the body use D3 so it's important to get into a routine with this.

[nw1991 in reply to SeasideSusie]

Thanks SeasideSusie. I find it quite overwhelming knowing what and how much to take. I got the better you oil and was putting it on my skin twice a week.

[SlowDragon Administrator in reply to nw1991]

Many Hashimoto's patients start with a period of appearing to be hyperthyroid. As the thyroid comes under attack, large amounts of thyroid hormones can be released as thyroid cells breaks down causing temporary high thyroid levels

Far to frequently medics see low TSH, high FT4 and assume (wrongly) that patient has Graves' disease and don't confirm it by testing antibodies

I nearly had similar, over 25 years ago. I had lost a stone in weight....but mux of hyper & hypothyroid symptoms. Fortunately my GP knew enough to test antibodies. (And this was pre budget cuts when a GP could still order full testing)

[nw1991 in reply to SlowDragon]

I never knew they could do full testing in the past! If only it were still this way! All I want is for a specialist to tell me if medication could improve my symptoms, and if so, to prescribe it to me. I'm thinking my only way is private so i'm looking at recommended specialists so I can book in a consultation.

[SlowDragon Administrator]

Your high antibodies confirm you have Hashimoto's. We see many Hashimoto's patients who never had Graves antibodies tested before being put on carbimazole

Carbimazole is not the correct treatment for Hashimoto's

Have you done coeliac blood test yet?

Are you now on strictly gluten free diet

Always get actual results and ranges on vitamin tests

You need results and ranges for vitamin D, folate, ferritin and B12

Exactly what vitamin supplements do you currently take?

Vitamin levels need to be optimal for good conversion of FT4 to FT3

Just testing TSH is completely inadequate

You need full Thyroid testing.

Most UK patients forced to do so privately

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If you need vitamin and thyroid testing

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

When specialist is testing next week, will test be early morning?

Make sure to get TSH, FT4 and FT3 tested together and you are legally entitled to printed copies of your blood test results

[nw1991 in reply to SlowDragon]

Hi SlowDragon.

Thanks for replying!

I had coeliac test, it was negative. I am strictly gluten free.

I haven't done a vitamin test since I last posted my results but they all seemed pretty fine. I'm on B12 injections 2 monthly and betteryou Vitd spray with ingennus b b12 tablets.

I'm not on levo, currently they won't prescribe me any meds as my TSH is fine. I always do my bloods first thing in the morning however the NHS don't test FT4 & FT3 so i will have to do this privately and post my results. Many thanks for the links. I do find the full vitamin one costly but i wasn't aware of the private NHS website which is much more affordable and really useful so thanks.

Will post my results soon

[SlowDragon Administrator in reply to nw1991]

The NHS one is relatively new.....I haven't used it yet

But others have

Has the advantage of being NHS approved if dealing with a difficult GP

As you have high antibodies and symptoms treatment should be considered.....but you would need to show low FT4 and/or low FT3 results

Doing bloods as early as possible in morning and before eating or drinking anything other than water helps increase TSH

All four vitamins need to be optimal too

[nw1991 in reply to SlowDragon]

Thanks SlowDragon. So even if I go private, I wouldn't get any treatment or medication unless the FT3 or FT4 were out? I find it hard to understand why with such high antibodies and all of my symptoms, and my weight now taking me into the obese bmi category why they won't consider treatment! So many Doctors talk about a healthy BMI but don't seem to care that mine is out of control and nothing I seem to do is helping the weight.

[SlowDragon Administrator in reply to nw1991]

I would suspect your FT4 and FT3 are likely low

[Lesleyg13 in reply to nw1991]

I saw it mentioned on here recently that for menstruating women, which I believe you are, TSH is much higher mid cycle, so best to get yours tested at that time if you can.

Just found the original post, it was in jimh111's reply:

healthunlocked.com/thyroidu...

"See the bottom two graphs in this ncbi.nlm.nih.gov/pmc/articl... ."

[nw1991 in reply to Lesleyg13]

Thanks Lesleyg13

[shaws Administrator]

If you've been wrongly diagnosed as being hyPERthyroid but are actually hypothyroid this is the condititon which usually increases weight (due to your metabolism being lowered due to the condition). Unexplained weight gain is one of the commonest questions on the forum. If not prescribed an optimum dose of thyroid hormone replacements weight can increase.

It's not the first time that doctors have made a mistaake between hyper or hypo.

Many, many doctors have no knowledge of clinical symptoms at all and only go by our TSH result and prescribe due to it alone, instead of doing a Full Thyroid Blood Test which is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Following the procedure for testing, given by SlowDragon

.

[nw1991 in reply to shaws]

Thanks shaws! They won't seem to medicate the hypo as my tsh is in range. Is there any way i can get them to medicate to help me with my hypo symptoms while my tsh is still within the NHS guidelines?

[shaws Administrator in reply to nw1991]

I doubt they will break their rules - as thet have to follow the guidelines. Even though, on this forum, we believe they are wrong at times.

[Batty1]

This is exactly what happened to me prior to thyroidectomy and sadly after thyroidectomy it got even worse and joint pains multiplied.

My Doctors always blamed me for my massive weight increase after thyroidectomy even though I provided MANY pictures (date stamped) to prove this crazy weight gain is not me wrapping a horse trawth around my neck suddenly and eating more.

[nw1991 in reply to Batty1]

So sorry you had to go through this Batty1. It’s awful isn’t it feeling like nobody listens and everyone assumes you must be a secret eater or something. I eat less than I ever have yet the weight just keeps going up. I calorie counted and I was under eating massively but no change. Did you get any resolution?