I need a real life Dr House!

[SinkGirl]

My health has been bad for a long time, diagnosed with endometriosis first, then adenomyosis, then ME then fibromyalgia. I don’t believe I have fibro, as although I have widespread pain I have other symptoms that don’t seem like they fit at all.

I’ve been convinced it’s my thyroid so I’ve been doing regular private blood tests this year to try and figure out what’s going on but my levels are all over the place - highest TSH has been 5.95, but two weeks later it was 1.64. I tested almost three weeks ago and it was 3.48, GP ran some tests yesterday and the results are already back and visible online and it’s only 1.4. I don’t understand why the levels are so variable, but the doctors aren’t concerned in the slightest about the change (other levels are also variable: FT4 from 12 - 15, FT3 from 4.5 to 6.3, TPO antibodies from 10 to 22.4).

I had low vitamin D (19.9) and folate (1.64) levels back in May so have been supplementing those. I retested them a month in and they were 49.4 and 5.28, although now my folate has dropped back down to 3.9 even though I’m still taking it. Haven’t retested Vit D yet.

Serum ferritin was 32 a year ago, now 41 (24-400)
Serum B12 seems to be dropping, still in range but probably not optimal: 327 a year ago, 254 now (190-660)

Everything else seems fine, only other things of note is that my MCH has been slightly above range (32.5 to 33.7) every time it has been tested in the last few years.

This test my adjusted calcium was borderline low - 2.19 (2.2-2.6)

Everything else looks normal.

I have literally no idea what is going on, my GP certainly has no idea. All I know is that I feel absolutely awful and I’m struggling to function. Main symptoms are:

• severe fatigue
• Pain, weakness and burning sensation in hands, feet and legs
• Zero sex drive (literally - I have become asexual)
• thinning hair
• disproportionate weight gain
• acne on face and body
• palpitations that come and go
• vertigo
• anxiety and depression
• twitching muscles (legs and eyelids mainly)
• back pain and altered sensation across my back
• dry skin
• brain fog / loss of concentration

There’s more, but that’s the main stuff.

So I’m completely confused, desperate for some help and I have no idea who to see or speak to. I don’t care what it is, I’m not wedded to the idea that it’s my thyroid, but thyroid problems run in my family, the symptoms fit and the way my levels go up and down seems very unusual. I just want to feel better and I don’t care what the diagnosis is, or what is involved.

I need to find a doctor who’s willing to help me figure it out! How do you go about such a thing?

One of my twins is having health issues right now and I need to get my shit together and feel well so I can do everything he needs.

Does anyone have any idea where I might start looking for help? I’m out of ideas.

Could you ask for a referral to an endrocrinologist perhaps? You aren’t going to be able to analyse those different blood levels effectively unless you have some medical training.

Dr House would always say it's sarcoidosis, but it never was.

Dammit what, so even Dr House couldn’t help? I’m screwed then 😂

cauliflower after speaking to quite a few people with thyroid issues and being told they’ve been totally fobbed off by endocrinologists, I haven’t bothered asking. I guess I’d need to find someone who really specialises in thyroid, from what I’ve been told most endocrinologists primarily focus on diabetes since that’s what they see most.

I’m sure there’s something hormonal going on (aside from my thyroid, if that is being rubbish), the sex drive issue is massively affected by hormonal contraception and other hormone treatments (although I’m not on anything now and it’s still long gone)

I would recommend NOT googling it. Whenever I do that, it gives me about a week to live. Frightens the hell out of me.

I don't know what's going on.... but have similar

Tested low for
Vitamin D
Folate
Iron and ferritin
B12
Zinc
Magnesium

Severe fatigue and numbness/tingling down left hand side of body for over a year, brain fog and lots of gastro symptoms (could write a long list but very similar to you- chronic pain and joint pain). Diagnosed with Functional neurological disorder and CFS. Left to get on with it by totally clueless GP.

Tried loads of things to help- only two things have worked to some degree: taking a high dose probiotic (symprove) and having an iron infusion (which I had to fight really hard for).

Secondary things which have helped a little bit: cutting out gluten, spending more time outside everyday to raise vitamin D naturally (no suncream), acupuncture every 2 weeks and eating more plants.

It's a giant puzzle but I think for me it's a combination of a problem with digestive system breaking down food (had camera both ends with no result) into useable energy and lack of microbiome diversity.

OP, I suggest seeing an NHS Endocrinologist as soon as you can.
I had similar symptoms to you (plus others) have some very complex & rare endo problems which could simply not have been diagnosed by any other professional; they literally saved my life.
Do some research on the various hospital consultants in your area & request to see a general one rather than a diabetes specialist. Obviously take your test results along for reference, they'll be repeated if deemed necessary. There are many other blood tests (& others, eg mri scans) which can only be carried out in a hospital setting, inc as a day admission.

Meanwhile, do all you can to look after yourself on a day to day basis, obviously it is easier to say this than to do it but you must!!

Good luck with your DTs too.

I agree about an endo review. You need all your pituitary hormones checking including a morning (ideally 8-9 am) cortisol level.
I hope you get things sorted out

Thanks all.

I’m a bit wary of being referred - earlier this year I harangued my GP so much that he wrote to a local endocrinologist for input and they responded with “everyone would feel better on levothyroxine but we can’t give it to everyone”. I basically want to make sure I don’t see that guy, but I have no idea who it is!

I’m just so tired of being dismissed, I know something isn’t right but it seems no one is interested in figuring it out. I get that it’s maybe complicated but the response to that so far has been to leave me to get on with it.

I would see someone privately but then I wouldn’t be able to afford all the testing so there’s little point I guess. I suppose I need to ask GP to refer me and hope for the best.

In House they alway suggested lupus. Thyroid problems are among the symptoms. Normally diagnosed by a rheumatologist. I have fibromyalgia but few of the symptoms you mention, although some of them are side effects of typical fibro meds. I hope you find an answer...

What age are you op?

Hate to say it, but if you Google 34 symptoms of menopause quite a few of those fit!

I’m not on any meds for fibro - I used to be, but they made my fatigue so much worse that I stopped. I’m now only on morphine, for the endo / adeno double whammy.

My GP referred me to a rheumatologist... who refused to see me because my GP had “already diagnosed” fibro (GP said ME and fibro are the same thing so as I already had an ME diagnosis it must be fibromyalgia - that was the extent of the diagnostics!)

In the latest blood tests they did check immunoglobulin A which I believe is a marker for lupus and other things but it was within normal range so I think that’s basically ruled out.

Sometimes I wonder if I’m just going mad and this is all some figment of my imagination. I’m so fed up with it.

Whereabouts in the country are you?
I know a really good endocrinologist who I have worked with before.

Also where have you put on weight? All over your body or has it all gone to one area?

Can you go and see s different GP. I honestly think this whole thing is ridiculous. I know we need to save money in the NHS, but you need to know what is going on and the only way to do that is to be assessed by the specialist teams.

I’m in Dorset

I’m with, by far, the best GP surgery in my area and the GPs are very nice and trying to be helpful but I guess they feel they can’t do anything with my results as they are. I’m going to do another private test in a couple of weeks and if there’s a big variation again at least it gives me a bit more back up. Then I’ll go and see them and see what they say. It is so frustrating. Was reading a blog by a GP yesterday saying that it’s crazy that they hand out SSRIs based on symptoms alone (and despite little evidence they actually work, and some significant risks) but if you have all the textbook symptoms of hypothyroidism but normal blood tests you’re made out to be crazy. It’s very true.

ME and fibro are definitely not the same...I really suggest you get a referral to a rheumatologist. If you can afford a private referral it might be worth it to get the ball rolling. I see a private GP and it's worth every penny to have someone that listens, treats me like an intelligent adult, and is willing to engage with my ideas. If you can possibly afford it, then I really recommend it.

I'm not taking any SSRIs...I had been prescribed them but they didn't suit and/or were contraindicated for other meds. As well as various things for pain, I take tixanidine (a muscle relaxant) which helps me sleep, and intravenous minerals (Myers cocktail) to help with the fatigue.

Lupus, according to House

Have you been tested for celiac? Low vitamin levels are common, and although it is a problem in the digestive system it is also an autoimmune condition and the symptoms aren't always typical. Mine were fatigue, low iron, vit d and calcium and lots of light headedness etc.
I also am waiting for the tilt table test for POTs, which could also explain some of your symptoms and is much more common in women than men. There are some other things it could be, but don't assume that you'll get your answers obviously.
I am a few years into getting my diagnoses, and have been diagnosed with a few things, one of them Celiac.
My symptoms are mostly atypical and therefore I have got more answers from a physiotherapist, the internet and other family members diagnoses than from my GP

I was tested for coeliac several years ago and it was negative, I dont eat much gluten these days and don’t notice any change in symptoms when I do eat it so I think it’s unlikely but not impossible.

I’m 99% sure that whatever is going on is related to hormones in some way. I guess I just have to go back to the GP and beg for some more help.

Tell the GP that you need a referral to an Endocrinologist to get to the bottom of it, ideally one specialising in Pituitary function; you should be able to find some names via NHS & local hospital websites.
It might be useful for you to read up on the Pituitary Foundation's website, there's good resources there - don't be afraid to reference that in your conversation.
Keep going!!