Newbie: please help, over active thyroid and other problems - please be kind!

[bexterjenny]

Hello, I don’t know where to start so I’ll try the begining!

48 year old female

Diagnosed with ankylosis spondylitis (auto immune disease) in 1987

Cutaneous Lupus in 2011

Hypertension in 2015

I recently went to the doctors and had bloods, she phoned me a few days later and said “you’re thyroid toxic” and said I had to take 20m Carbimazole daily.

I’m confused and frustrated as I am constantly freezing cold (a joke to my family and work colleagues), have to be VERY cautious as to what I eat as I put on weight so easily which is bad for my joints due to the AS so eat fruit during the day an one main meal after work.

My bowels are slow, normally 3-4 days but can be up to a week between movements (sorry that’s gross but I think it’s relevant).

I’m married to a wonderful, kind, supportive husband and love him dearly and find him incredibly attractive and apparently I should be a raging nymphomaniac but I’ve lost interest in sex!

I constantly suffer debilitating exhaustion, if one person tells me to exercise one more time I swear I will lose it, no one seems to appreciate the extreme fatigue that goes hand in hand with auto immune diseases.

I could go on but basically all of my symptoms, apart from heart palpitations, point to hypo not hyper, how can this be??????

My main concern is losing my hair (again, I have on a couple of times due to medication for the AS) and gaining weight, I CANNOT afford to put weight on because of my joints.

I eat so little now AND put weight on, what will happen once the carbimazole kicks in, will I just have to stop eating?? For example, I went on holiday for 2 weeks and put on 12 pounds, that doesn’t sound like hyper!

It just seems so unfair, I apologise for wallowing in my own self pity but I’ve been battling my own body for 37 years and I’m tired of it, I have contemplated not taking the medication and if my heart gives up, then so be it but my family depends on me and I still have a hefty mortgage (thanks to the ex) and no insurance (premiums too high) and don’t want anyone saddled with my debt.

I’m stuck between a rock and a hard place.

If I’ve done anything incorrect or followed the ring procedure then I’m truly sorry but I’m just reaching out for some advice.

Thank you everyone x

[greygoose]

Hi bexterjenny, welcome to the forum.

I could be wrong, but I'm thinking that your doctor has made a classic mistake. There are three tests that should be done to determine thyroid status, plus two antibody tests. But, doctors usually only do one test out of all those. What is called the TSH test. If the result is high, they diagnose hypo and put you on levo - although not right away, because they really hate diagnosing hypothyroidism, so make you wait three months and do another TSH test. However, if your TSH is low/suppressed, they automatically go into panic mode and prescribe carbi without doing all the required tests!

I'm sure you know that the main cause of hyperthyroidism is Grave's disease. Grave's is autoimmune - and, as you already have several autoimmune diseases it wouldn't be surprising if you had a thyroid autoimmune disease. But, there are two autoimmune thyroid disease - Grave's and Hashi's. Hashi's is basically hypo, but it starts of with a period of hyperthyroidism, with a suppressed TSH. So, doctors see that and automatically assume it's Grave's and don't even bother to do the right tests, with the result that a lot of Hashi's people find themselves on carbi, which is absolutely wrong for them.

So, if I were you, I would go back to your doctor and ask her if she's done the antibody tests. And, if she says no, insist she does before you take another dose of carbi. You want TRAB tested for Grave's, and TPOab for Hashi's, and it's important to do both. Because if you have either, you need to know.

I agree with you, it does sound more like you have hypo rather than hyperthyroidism.

[bexterjenny in reply to greygoose]

It’s so difficult to get hold of my doctor, I’m seeing a private consultant Monday (there goes my funeral savings) to try to get some answers. I’m very confused but agree that it could well be auto immune as I was told if you have one, you’re far more likely to get more. Could I please have your consent to show your comment to the consultant? Many thanks indeed x

[greygoose in reply to bexterjenny]

I'm not sure that your consultant would find my comment very flattering! lol But you could copy out the gist without the criticism of doctors, which might not go down very well.

Yes, it's true that if you have one autoimmune disease, you are likely to develop others.

If you can get hold of those blood tests they've just done, it would be very interesting to see them. You can get a sort of idea if it's likely to be Grave's or Hashi's just looking at the Frees. Because with Grave's the levels will be much higher than with Hashi's, usually.

[bexterjenny in reply to greygoose]

Hi

I have been spurred on by your comments! phoned my doctors and collected the test results in my lunch time (luckily the surgery is 5 minutes walk away).

Apparently the lab never sent results so the practise manager phoned for them, they are entered onto my medical records as such:

FT4 23.9 (7.7 - 15.1)

TSH 1.12 (0.34 - 5.6)

FT3 11.2 (4.3 - 6.8)

I have no idea what I am talking about as this is my first set of blood tests (for this, I have had so many I feel I've probably lost litres over the years!)

Any light you can shed would be very much appreciated.

Thanks x

[greygoose in reply to bexterjenny]

Well, as I said, I'm no expert, but that looks more like Hashi's to me. With Grave's I'm pretty sure the TSH would be much lower. So, you really do need those antibodies tested.

[bexterjenny]

I think they only took TSH T4 and T3. I will ask for a print out. Thank you x

[bexterjenny]

Hi there, thank you for the reply, my results are:

FT4 23.9 (7.7 - 15.1)

TSH 1.12 (0.34 - 5.6)

FT3 11.2 (4.3 - 6.8)

That's all they say so I take it that all of the others haven't been done