Advice Please

[bubblesmcgee]

Hi,

I’m new to the site but would really appreciate some advice.

I was diagnosed with Graves Disease in my late teens and had two flares of hyperthyroidism which were treated with carbimazole. My thyroid stabilised for about ten years and I have had periodic checks but after having a contraceptive implant fitted I noticed my weight creeping up and my moods changing. At first I put it down to the implant which I had removed late last year but when the symptoms didn’t disappear I started wondering about my thyroid. I asked my Gp for a blood test back in January which came back as follows: TSH 4.30 (0.27 - 4.20) T4 14.30 (12-22). I have been noticing more and more symptoms, I’m always cold, my joints, in particular my neck and back ache, my skin on my legs and hands is very dry, I forget or substitute words in a sentence (which is very embarrassing!), I’m literally always dog tired (doesn’t help that I’m a shift worker), I am really miserable with very changeable moods, my libido has reduced, my hands and feet are always cold, I’m getting very clumsy (my partner thinks it’s endearing thank goodness, especially when I accidentally poke him in the eye getting back into bed!), my nails have got super brittle and worst of all I’ve gained loads of weight (15kg in a year).

I had a second set of bloods this week which came back as follows: TSH 4.30 (0.27-4.20) T4 14.20 (12-22). I’m seeing my GP next week but I’m not sure what to ask for. It looks like sub-clinical hypothyroidism but if I start taking any meds I will have to declare it to work and will loose my medical very until the condition is stabilised. Do I ask for more detailed bloods, do I push for meds or do I ask to wait another few months for a repeat set of bloods? I’m fed up with feeling rubbish and especially with putting on weight, I feel disgusted with myself for being this size but I feel there’s very little I can do about it? Does anyone have any dietary advice? At the moment I’m trying to lay off of sugar?

I’d really appreciate any help anyone can give me. Thanks in advance.

Sarah

[jimh111]

Your signs and symptoms suggest you are hypothyroid and need thyroid medication. The blood tests are not totally realiable, especially when you don't have the fT3 figure as well. I'm not sure what you mean by "but if I start taking any meds I will have to declare it to work and will loose my medical very until the condition is stabilised". I suspect there's some mistyping. Can you clarify. I would ask for your hypothyroidism to be treated, based on your signs and symptoms. You are not going to be able to function normally until you are correctly medicated.

[bubblesmcgee in reply to jimh111]

I work at sea and as such we have to have a medical certificate to be able to work. Having researched I would be deemed temporarily unfit for sea until I was stable on medication. Sorry for the typo, the joy of iPhone auto correct!

It just sucks, and my partner keeps brushing off my symptoms and just telling me I’m moody and tired because of work!

Thanks ever so much for your reply, I really appreciate it.

[greygoose]

Yes, you are hypo, now. Your doctor will call it subclinical, but you're actually hypo when your TSH hits 3.

I think your diagnosis of Grave's was wrong. It would seem you have Hashi's, which starts out with high levels of thyroid hormone, and then you gradually become more and more hypo. And, I don't know anything about your work situation, but ignoring it isn't going to make it go away.

What you need are your Hashi's antibodies tested - TPO and Tg antibodies. Did they even do antibody tests before 'diagnosing' you with Grave's?

[bubblesmcgee in reply to greygoose]

Why do they class it as sub-clinical? They’ve never done more in depth bloods than tsh and t4. I’ll have a look at Hashimotos, the consultant they sent me to just gave me carbimazole until I was sorted each time and then got rid.

I work at sea and having taken a look at the medical requirements I will be deemed temporarily unfit for sea until any medication is sorted. I will ask my GP if I can be tested for antibodies.

Thanks ever so much for your help, I really appreciate it. It’s nice to know there’s people out there so willing to help!

[greygoose in reply to bubblesmcgee]

Why do they class it as subclinical? As far as I can see, in order to avoid diagnosing hypo! They absolutely hate diagnosing people with hypothyroidism. Not sure why.

Treatment for hypothyroidism isn't 'medication' in the strictest sense of the word. It is thyroid hormone replacement, and can take a long time to get 'sorted'. It's progressive. With thyroid hormones, you have to start low and increase slowly - a starting dose of 50 mcg levothyroxine, and increase by 25 mcg every six weeks until symptoms are gone. There are no short cuts, I'm afraid.

[bubblesmcgee in reply to greygoose]

It seems very strange to me to give someone a half way house diagnosis. I will ask my GP for a full set of bloods and see what he has to say and report back. Unfortunately due to work commitments I’m not going to be seeing my usual lovely lady GP who has been dealing with me since my symptoms started. I’m wondering if I should just wait the extra 10 days so I can go see her.

[greygoose in reply to bubblesmcgee]

Might be a good idea to wait, yes. It's something they do all the time, this 'half-way house', and it really gets on my nerves! Especially as they don't even understand the dictionary definition! Subclinical should mean that the blood test results are positive but you don't have symptoms. And yet they use it to describe people who are actually hypo - because you're technically hypo when your TSH reaches 3 - but whose TSH is under 10! It's a complete farce! Which is why I think they do it to avoid diagnosing as many people as possible!

[jimh111]

You had hyperthyroidism and now your blood hormone levels are outside their reference intervals. Your signs and symptoms indicate hypothyroidism. Dry skin is very specific to hypothyroidism. You will be prone to losing concentration and making mistakes. So, if your job is high risk you need to take this into account.

I would request copies of your medical records from your GP and consultant, so you have your blood test history. I would ask your GP to test your TSH, fT3, fT4 and perhaps antibodies. Your GP will need to state very clearly that fT3 is needed, otherwise the lab will ignore the request. If your GP won't do this you can get private blood tests.

I would ask your GP to prescribe you some levothyroxine based on you symptoms and current blood test results. It needs to be more than 25 mcg daily, 25 mcg is a tiny dose which will not make a difference. Point out the effects on your life and how crucial it is to your work and safety.

Be friendly with your GP but if they are not helpful be more assertive.

[bubblesmcgee in reply to jimh111]

Unfortunately my job is pretty full on, I load and navigate the ship I work on and it’s a very busy ship. I will ask my gp for a full set of bloods and see what he says about meds and report back on progress! Thanks for you help ☺️

[HLAB35]

Hi bubblesmcgee,

I agree with Grey Goose. Your diagnosis of Graves was wrong and you need a full thyroid panel to include the antibodies.

The current situation is that you're hypo (very likely to be Hashimoto's) and likely, due to your symptoms - feeling cold (could be low iron) and being forgetful (could be low b12) to have deficiencies in certain vital nutrients as untreated hypothyroid patients have low stomach acid making it difficult to absorb them. Please ask for iron, b12 and folate and vit d with your full thyroid blood panel (to include ft3). Make sure you do it as early in the morning as possible on an empty stomach. Come back here to post results when you've got them with any other symptoms which someone here will recognise!

[bubblesmcgee in reply to HLAB35]

Will do and I’ll report back how I get on with my GP. Wondering if having a very gassy gut is part of it too. I really suffer with joint paint especially my neck and back but was tying these into an accident I had two years ago, maybe as they’ve got so much worse in the last 6 months they’re actually to do with this! I’ve also found myself craving cornflakes, cheese and chips and have really gone off meat.

Had a very embarrassing situation at work today too where I was inducting 2 new crew and was just stumbling trying to get what I wanted to say out. It’s so frustrating!

Thanks for your help, it’s much appreciated.

[HLAB35 in reply to bubblesmcgee]

Pleased to here you're being pro-active and not quitting on life with these very debilitating symptoms!

I recommend doing a bit of homework on Hashi's symptoms on this website and also B12 and Iron deficiencies, as so often blood results will come back 'normal' but may be very low in range - which for someone in active service is no good - you need to be optimal!

b12deficiency.info/signs-an...

livestrong.com/article/4081...

[Espisnowwoman]

U needs meds and a full lab work up. Thyroid is the engine to ur body.

[bubblesmcgee]

So I went to the GP today to discuss the test results, saw a different GP and pretty sure it was a mistake!

I described my symptoms to the GP and had written out a list in my own words and taken in the thyroid UK symptom sheet with my symptoms ticked as I knew I forget to mention things. He didn’t even look at the lists I’d taken the time and effort to make!

Thanks to you all I knew to request more bloods and he has agreed to check antibodies, folate and vitamin b but he said that my folate and vitamin b ‘were fine a few years ago’ and refused to check vitamin d as everyone’s is low at this time of year so just take some supplements. So blood tests booked in Tuesday week after next for antibodies, t3, vitamin b, folate, cortisol and a few other things. And then booked back in with original go to discuss results 2 weeks after that when I get back from work.

He said that my tsh was only just out of range and t4 was normal so I shouldn’t be having symptoms. So when I asked why I was feeling so frankly awful he said that the tiredness could be linked into chronic pain (as I have been referred to a chronic pain unit for my shoulder) and that fatigue could affect my moods. But thankfully I gave up sugar a month ago and can prove my activity level with a Fitbit which shows on average I do 10-15000 steps per day and so could prove that it wasn’t for not trying that I’m not loosing weight and am in fact still gaining so he’s referred me to an endocrinologist who I’ll be seeing on 15th May (although I have got to travel nearly 40 miles for an appointment that soon).

No mention of levothyroxine on the horizon though as my thyroid levels aren’t bad enough apparently...