Don't know where to turn next

[AliF]

Feeling really awful every couple of days, and just awful in between. Dizzy , pains in my arms and legs, headache , tinnitus, fatigue, thrumming body sensation. Sometimes think I am going down with a cold, sore throat and blocked nose then it comes to nothing.

I have an appointment with a rheumatologist in a couple of weeks from a GP referral but I am terrified that they will tell me I have ME, MS Fibromyalgia. I think Hashimoto's is more than enough for me to cope with.

I have a prescription for anti depressants but haven't taken them.

I've been taking lots of supplements. Selenium, vit E, general B, methylcobalamin, iron bisglycinate, vit c and sometimes zinc, magnesium and Occasionally turmeric.

I am thinking about seeing a private endo asap in either London or around Windsor/ Reading if anyone can recommend one please DM me. There is only 1 in Harley Street on the Thyroid Uk list. Don't think I have ever felt well on 100 Levo for a sustained period of time apart from possibly a couple of months last summer, but that was after a steroid injection for a frozen shoulder so that might have had something to do with it.

I am really struggling now. 3+ years of feeling mostly rubbish is taking it's toll. Can't take much more.

[puncturedbicycle]

Sorry to hear you're unwell. Do you know if you're optimally replaced on levo? It would be good to have a look at your last blood test results.

[AliF in reply to puncturedbicycle]

These were my bloods a month ago.

Biochemistry

CRP 0.90 <5.0 mg/L

Ferritin 34.1 20 - 150 ug/L

Thyroid Function

TSH 0.61 0.27 - 4.20 IU/L

T4 Total 114.9 64.5 - 142.0 nmol/L

Free T4 15.70 12 - 22 pmol/L

Free T3 4.00 3.1 - 6.8 pmol/L

Immunology

Anti-Thyroidperoxidase abs H 40.8 <34 kIU/L

Anti-Thyroglobulin Abs 19.7 <115 kU/L

Vitamins

Vitamin B12 334 Deficient <140 pmol/L

Insufficient 140 - 250

Consider reducing dose >725

Serum Folate H 43.27 10.4 - 42.4 nmol/L

Clutter responded. Need more Thyroxine. Dr says no. Also said to take iron and b12 so I have been taking. Think I am feeling worse if anything for the last few days. But probably better some days in between.

Makes it very difficult to function and hold down a job.

[puncturedbicycle in reply to AliF]

Yes, I can imagine. It looks like you need a bit of t3, or at least it might be worth giving that a go to see if you feel better. Your tsh is quite low which is presumably why your doctor doesn't want to raise the dose, but your t3 and t4 are a bit slack. T3 will reduce your tsh even further, and that makes doctors very nervous.

I'd suggest you ask for a referral but endos are often even more conservative than gps, so you'd need to be referred to someone you know will listen who would be willing to give you a trial.

Has the gp suggested what they think might be wrong?

[AliF in reply to puncturedbicycle]

GP won't refer me to an endo. Says something else is going on and has referred me to the rheumatologist. I am beginning to think she might be right. I said I was scared it might be MS or ME or fibromyalgia and she just said the drugs a rheumatologist would prescribe are pretty strong so I would need specialist supervision. I am now even more scared. I feel terrible and the waiting is unbearable. No cancellations available.

[puncturedbicycle in reply to AliF]

Try not to worry. You may find the rheum as baffled as the gp, in which case you'll be in a better position to argue another look at your thyroid meds. Idk about fibro but I don't think there is a treatment for ME, or not one that involves strong drugs anyway.

There is the Dr Toft article that says a trial of t3 isn't unreasonable if you are still symptomatic, so it may take some time (and/or a change of gp) but eventually if they find nothing else (and ME and fibro have no test, they are diagnosed through a collection of symptoms) you may be able to go down that route.

Have a look at this post, by another member here who went down a similar route (rheum, psych etc): healthunlocked.com/thyroidu...

A lot of folk here self-treat, which is also an option.

[AliF in reply to puncturedbicycle]

Thanks for trying to help. I have read lots of your posts and they are always measured and v sensible. MS is the really scary one to me. Think the thing the GP mentioned was rheumatoid arthritis. I did show her the pulse article but she said my results do not fall into the ranges discussed in the article. I think it was because of the TSH level.

Difficult not to worry when I am in quite a bit of pain but thank you for replying from the bottom of my heart. I am alone so have no-one to talk to. This forum is a lifesaver for me.

[puncturedbicycle in reply to AliF]

Bless you, I know that is a useless and glib thing to say - don't worry! - but I guess I mean try to keep your mind on other things and have mercy on yourself, give yourself a break even if it means just some kind of distraction for a while. I totally understand if you're in pain sometimes this isn't possible.

Yes, MS is the big one isn't it, but you'd be very unlucky indeed to get that diagnosis. You have a lot going on and the odds are in your favour that it will be something less awful. When is your appt?

I do understand, even those of us who aren't alone as such, we can be alone with our situation. I was alone for many years and I'm lucky now, I have my partner, but that was a long time coming. For a long time it was me and my dog, and she was my best mate.

Keep coming here for help and company. I agree, it is a lifeline if you're alone or even if you just feel alone in your situation. It's also great for self-advocacy. It can seem like nothing will ever happen to help you, but keep learning and one day you will turn a corner you will find something that will get you a bit further. It can just be so bloody slow and frustrating.

[AliF in reply to puncturedbicycle]

Thank you. My appointment is on the 22nd. The day after my birthday.

I do tend to obsess which makes matters worse. The lady in that post was going to be tested for MND and myopathy in various organs. Hadn't even considered those !

I am wondering too whether to stop all the supplements for a week or two to see if it makes any difference.

I've got a tortoise, not quite the same as a dog but I have had him since I was 5 ( getting on for 50 years)

[puncturedbicycle in reply to AliF]

Oh wow, I'm fascinated w tortoise things, like all the hibernation stuff - the preparation, weighing, waking them up etc. How wonderful to have him for so long. That's the worst part about a dog, that they don't live very long. Hasn't stopped me having more though. You get accustomed to having them and it's hard to get on without one.

Not a bad idea to stop supplements before a test. Why? I guess if they test anything that might mislead them (eg you're best getting a correct result for b12 and iron if you stop before the test, but I can't remember how long before).

I didn't read all the comments in that other post, and I really sent it because she had been sent down all these other routes - like you - and finally someone figured it out and gave her some t3. It's a shame when it gets that far, but she did get somewhere in the end.

[AliF in reply to puncturedbicycle]

The hibernation preparation consists of not losing him in the garden and then popping him in a box full of straw in October and putting it in the shed until April! It's worked so far. Think I will stop the supplements on that basis then. Good thinking. There will be lots more tests I know before I get any kind of diagnosis. Thank you for listening and for helping.

[puncturedbicycle in reply to AliF]

It's my pleasure. Just hang in there, you'll get there in the end.

[AliF in reply to puncturedbicycle]

Doing my best to hang in there. Thanks PB!

[greygoose]

How much B12 are you taking? It might not be enough.

Have you had your vit d tested? If not, it might be an idea to get that done, too. Low D can cause all sorts of aches and pains.

Oh, and frozen shoulder is a hypo symptom.

[AliF in reply to greygoose]

Vit D was tested at the same time - it was good level. Think it was seaside Susie who said " what a lovely vit D level". Don't know why it hasn't come up. I am taking 1000mcg Solgar b12 although there is also a bit in the b complex. Yes I know my frozen shoulder may also have been related. It was agony for months. I had one steroid injection that did nothing and then another whilst having an ultrasound that did the trick almost immediately.

I think it was after that I felt a lot better for a few weeks.

[greygoose in reply to AliF]

It might be better to take 5000 mcg methylcobalamin. 1000 isn't very much.

[AliF in reply to greygoose]

5 little tablets all at once under the tongue?

[greygoose in reply to AliF]

Well, people normally buy tablets of 5000 mcg. But, you only need to take them for four or five months, then go back to a 1000 maintenance dose. So, you could save the 1000 tablets for later, and buy some 5000 tablets to take now.

[AliF in reply to greygoose]

Thanks Greygoose. Think I will stop the supplements in the run up to my rheumatology appointment so my bloods give a truer picture. What do you think ?

[greygoose in reply to AliF]

Well, I don't know what they test in rheumatology. And I don't know how supplements would affect them. So, I really can't comment on that.

[puncturedbicycle]

I had the shoulder thing too (not frozen but agonising rotary cuff injury, eventually in both shoulders). I have never been in so much pain in my life and it took over a year for each to heal. If you do a search for shoulder here you'll find lots of people get it.

[beh1]

Ali I have all of those symptoms and had all sorts of tests with rheumatologist and neurologist - all negative. Even had mri of head!! I feel certain it's all related to the hashimotos but still working on how to manage it. I don't think they'll find anything sinister wrong with you. Try not to worry.

[AliF in reply to beh1]

Comforting to know but not good that we both have all these horrible symptoms that make it difficult to live life rather than just tolerate it.

Are all your blood results "within range"?

[beh1 in reply to AliF]

Well to be honest I've been experimenting with ndt to see if that helps but when I did a blood test my antibodies had shot up and my t4 off the scale low, so back on t4 and t3 for now. But like you, I'm determined to resolve this. There is an answer out there...

[AliF in reply to beh1]

So you still had all the pains with normal bloods and that is why you tried the NDT? The arm and leg pains are a new development for me but haven't felt well for a long time, if ever really since being diagnosed with Hashi's. So did you feel any better with NDT despite the blood results?

[beh1 in reply to AliF]

I developed pain after a couple of years on Levo. I was lucky enough to be prescribed t3 which really helped my mood, but I lowered t4 to compensate and went hypo. Brought t4 up for 3 weeks then went on ndt but went hypo again ( more ndt increased tinnitus). So I've never been consistently with good labs, and I think this is the key for you too.

As someone else said, your t3 is a bit low. This could be the issue. Lots of people use t3 or get it from ndt.

Why not wait until you've been given the all clear for everything else, then have a think about t3 either alone or in ndt. I'm not a health professional, so you'll need other people's guidance there.

[AliF in reply to beh1]

Good advice and your description of pains after a couple of years on Levo sounds familiar. When you say you went hypo do you mean you felt dreadful hypo or your bloods showed you were hypo --- or both ? It certainly is a challenge it seems to feel ok ( let alone really well! ) and have correspondingblood test results. Thank you for replying. You have been very helpful. Much appreciated.

[beh1 in reply to AliF]

I felt tired and cold so had private blood tests done.

One thing I found helps the pain is magnesiummalate. I read about it in a Patrick holford book. Good luck.

[AliF in reply to beh1]

Thanks and good luck to you too. I will keep an eye out for your posts. A

[Corny67]

I also have fibromyalgia and take anti depressants because they really help with the all over muscle pains especially my arms and legs. I've recently been diagnosed with Graves' disease so I understand that it all gets a little too much to bare. I really do hope you get some relief. Big hugs x

[AliF in reply to Corny67]

Thanks Corny67. Which anti depressants do you take ? I have some citalopram but haven't taken any yet. Dr said they would make me feel sick for a couple of weeks.

I am sorry you have Graves and fibromyalgia. Have you learnt any coping mechanisms for dealing with things?