Any help appreciated

[Fox78]

Hi all

I was after some general advice though appreciate people cannot diagnose but anyone similar with the same conditions I’d appreciate your advice! Sorry for the long post!

I already have a number of conditions autoimmune hypothyroid PCOS and diabetic type 2. I’m 43 and feel like I’m 93..most days

Thyroid came first nearly 4 years ago but suspect it’s been longer as I felt dreadful with mainly overactive symptoms albeit I was very underactive when diagnosed tsh 49 t4 5

Periods stopped hair loss constipation weight loss dizzy insomnia aches pains..went on standard thyroxine and I got worse ..gained weight 4 stone in 3 years, hair was coming out upset tummy sever boating shortness of breath( I’ve ended up in a&e twice with resting heart rate of 150 ecg always clear and said there was nothing wrong with my heart and oxygen stats always normal) I now take 160 propranolol and blood pressure and heart rate are normal

Fast forward two years GP tested me for PCOS and referred me to an endo as I’d gained weight still had brain fog dizzy bloating tired etc chronic pain especially in lower back

I was put on t3/t4 as I had a dio2 test done which confirmed a mutation in the gene which stops conversion of t4

Tsh is always suppressed t3 usually mid range and t4 is usually upper range so clinically I am fully medicated according to the consultant

I’m also over half way range for all vitamins and I supplement b complex, vit d, selenium, turmeric, magnesium

Still felt unwell and thought it was my thyroid so decided to go private with NDT which I have taken since last October

I can see an improvement in my thyroid on NDT my skin is less dry hair is thicker and less receding not as constipated and less brain fog

I also take the mini pill and 1000mg slow release metformin my sugars are fairly well controlled through diet I try and eat gluten free and less carbs my last hba1c was 41 I was only just above diabetic range when diagnosed

But I’m still in terrible pain I’ve very sensitive to light have constant ringing in ears lower back pain is awful to the point where I can hardly stand weakness in thighs and tummy I cannot sti down on the floor as I’d never get up.. I struggle to hold arms above head my neck and shoulders and always painful I struggle to walk first thing in the morning when I get out of bed I’m constantly tired to the point I could sleep probably 12-15 hours a day if I didn’t force myself to get up for work and I have tender pain points on my back and shoulders

I try to swim and walk but always feel exhausted afterwards to the point where I feel cold and shivery ache terrible feel very bloated and have to lie down even walking up the stairs does me in sometimes and I feel I get air hunger

I’ve had numerous RA markers tested a while ago which came back normal not sure if the results of these

I’m going to be speaking to my gp to see if I can be referred to see a rheumatologist but just wondered if anyone had experienced similar

Thanks for reading

[saluhouse]

Hi Fox78. I honestly don’t know what to say to you. You are obviously very sick and need help from a knowledgeable doctor(s). All I can say is please don’t give up trying to find the answers to your myriad of health problems. You are doing your best to cope under very difficult circumstances.

Think most people on this site can understand your desperation and appreciate how difficult your life has become.

Keep going - we are all rooting for you.

Xxx

[Fox78 in reply to saluhouse]

Thank you Saluhouse appreciate you coming back to me x

[JayCeon]

Hi Fox - I spose I've got similar things going on, 30 diagnoses, incl. a bit of autoimmune hypothyroid. And I can also relate totally to the 2nd (fibro-type) half of your post. I don't manage to work fully any more, however, got some disability pay. I've managed to get all of my pains down by pinpointing and working on triggers, but am still working on Ache, exhaustibility & sleep problems as these are the big problem at the moment.I can see two problem areas: thyroid/hormones and fibro-type symptoms - but you haven't mentioned if you are diagnosed, so I can understand you asking for a rheum-referral.

You are trying supps I think you mean to say, I don't understand that sentence tho. I only know my bloods were mostly OK, I still got loads of supps, but none helped. I do them again sometimes, and keep D3 going all of the time, selenium for the thyroid.

I keep diary of everything I get and do about it in a blog, divided up into the different areas like sleep/naps, gut, activities, pain, etc. This helps me to pinpoint and prevent triggers, to pace & self-care better.

You're already trying a lot already, docs, supps, keeping moving, good on ya.

My first suggestion is to work at improving pacing, for instance when swimming and walking, find the sweet spots: If 30 mins are too much in one go, then go down to 20 etc. Or 2x 20' if you feel you'd need more. And watch out, they invisibly move, so it's about getting a feeling for your body.

My second is looking for short, gentle exercises (yoga, tai chi, qi gong, incl. web videos, DVDS, books) and a gentle physiotherapist, e.g. osteopathy, chiropractic, acupressure, for the aches, pains, shortness of breath, arms legs.

Are these suggestions any help?

[Fox78 in reply to JayCeon]

Hi Jayceon no I’m not diagnosed as of yet but I’ve now got an appt at the gp to discuss being referred to a rheumatologist so I am hoping that will shed some light I kind of keep putting it off as I blame my thyroid and hope if I increase or change my meds it will get better but I think there’s more to it than just my thyroid so I really do need to have some tests done to see what’s going on

Thank you for your suggestions that’s really helpful