Help!

[jayne63]

I was feeling pretty good on my T3 and was discharged by my endo when I saw him in March!

The last two week have seen me losing a lot of hair again and I also pulled my back so could not run.I also have been getting some symptoms like my nails breaking up high( I had this when I was diagnosed in 2011)

Also some weird symptoms I have not had like pins a needled in my arms and in legs keeping me awake or indeed waking me up.I did up My T3 myself from one tab in the morning and half in the evening to 2 tablest a day as I thought I was hypo?

Anyway I work as a live in carer and came into placement for 2 weeks on Monday 31 st march.last night I had an awful night palpitations,racing heart. Pins n needles and a very very sore tum.I also keep getting a sore mouth!

So I dunno where to go and I am feeling very tired and a tad paranoid I know.

My other cousin female who is hypo has pernicious anaemia and my aunt and my grandad had it.alas I'm not near to my Gp until the 14 th and wanted to see if I should push for a test for pernicious anaemia or is it coz I upped my dose of T3 a week ago?

Some symptoms I have never had with the hypo....my shins are very sore but I did run and have been told not too whilst my muscle is better in my back....advice gratefully received...really am not happy that in space of 3 weeks I've gone belly up after feeling brilliant for over 6 months and a static weight after losing 2 and half stone.

[Hidden]

Hi Jayne63, I can't help, but can tell you that your experience mirrors mine. After being really ill for a time on T4 only, I fought for the addition of T3. For a while I began to feel so much better and even lost 1/2 stone. But over the last 9-12 months all the previous symptoms have returned plus some: weight gain, hair breaking and falling out, nails breaking, tiredness, shaking, brain fog and memory loss etc. I was signed off by my Endo and my GP is led by blood results,so no action. Good luck when you see your GP on the 14th.

[puncturedbicycle]

I'm in the same boat. Felt awful on t4 (possibly eventually I saw a 20% improvement on no meds at all), but felt good then great with the gradual addition of 25mcg t3 (was also taking 150mcg t4, then reduced to 125). Started t3 in March or April, started exercising again, went on a month-long tent-camping holiday, eventually (by Sept) I was walk-running six miles a day.

In Oct I suddenly seemed to go hypo again (hello constipation my old friend) and couldn't raise my meds without palps/raised pulse. Injured my knee just walking up the stairs (wth?) so stopped running and never went back to it.

Doc recommended cutting meds right down due to palps, then I seemed to stabilise (no more constipation) on a much lower dose of meds, but never felt well again.

All my thyroid levels look good. Nhs endo signed me off because I was seeing a private doc.

Have either of you had the other tests - ferritin, b12, etc? Mine were all low except folate, so now I'm wondering about pernicious anaemia (deffo have plain old anaemia but why do my levels drop as soon as I stop supplementing?), but going over all my old tests I see that when I was referred to the oral meds dept at UCL I was never tested for anti-Ro/anti-La, which was the whole point of being referred, so I thought Sjogren's had been ruled out but now I don't know.

God, I sound like such a hypochondriac, but when I'm well, I don't think about this stuff at all.

Sorry to hear you've both been equally unwell. x

[Hidden in reply to puncturedbicycle]

Hi again. No I've not had the other tests done, puncturedbicycle. When I went to my GP last week and he said "what can I do, your 're last tests were normal" , he then, for want of something to say, I think, offered me further (presumably the same, limited) tests "just to check", and as I'd lost the plot at that point, stupidly I didn't ask WHAT tests. So I'm assuming just TSH and T4 when I go to the phlebotomist on Thursday. I then don't get to see him again until 9th May for those results, but having now found this wonderful forum and knowledgeable people, I shall ask for all the other important tests to be carried out that I've now found out about. However, am fully anticipating having to raid the piggybank to have them done privately, before probably taking a different self-dosing route from my present unsuccessful NHS levothyroxine & liothyronine one. I've been on Levo for 32 yrs so have given it a fair trial!

No you don't sound like a hypochondriac at all. If we had no need to be agonising over this stuff, I'm sure we wouldn't be. What makes you suspect Sjogren's? I was diagnosed with Raynaud's when 15yrs, which I understand is associated with Sjogren's, and also have to take Replens for dryness; and I wondered what was leading you to suspect Sjogren's?

[puncturedbicycle in reply to Hidden]

Well, desperation to figure out what's wrong with me possibly.

Actually, for about a month I had been feeling an odd stickiness in my mouth, mainly at night when I was in bed reading, where my top lip was sticking to my gums as though it had been glued. I had to drink a lot of water and found myself running my tongue under my upper lip to separate it from my gum. The inside of my lip had a metallic taste, like it was inflamed. At some stage I had swelling too, like I'd been punched in the mouth. It was swollen in a perfect circle, like if I'd held a short piece of string between my lips with a pencil on the end and drawn a circle, that was where it was swollen. The dentist said my gums looked matte (where they should have looked shiny) so she referred me.

This was all happening at the same time I was going to Charing Cross GUM (which I shared with you on another thread), and the dentist put two and two together. Basically, except for the lesion, I was getting exactly the same symptoms in my mouth as on my vulva. Also have the extreme fatigue, some small issue with sore joints too (though that isn't a big feature, it's just a potential symptom I have). Twenty years ago my doc did some tests for arthritis when I went to her with sore hips, so that's been a longstanding problem.

I've also been diagnosed with TED, with dryness, etc. Eyes have been dry for years; I went to the optician with migraine (wondering if my glasses needed a new prescription) about eight years ago and she said it was probably the dryness that was causing it.

Anyway, the guy I saw at UCL was really hung up on sicca, and while dryness is part of it, it isn't the whole story, so basically he wasn't interested. I got the feeling I should have gone in and said "My mouth is really dry" and maybe that would've been better - ? But I don't need to drink lots of water to swallow my food for example, so I couldn't put my symptoms in a simple box if you see what I mean.

I have a friend who was diagnosed with Sjogren's after having joint pain and no sicca so it isn't a make-or-break symptom. I'm so paranoid, so I will point out that I had already been referred when my friend was diagnosed, so I'm not jumping on her Sjogren's bandwagon. (Like Sjogren's is a diagnosis anyone would want.)

[Hidden in reply to puncturedbicycle]

Oh that's not good.

But remember, just because you're desperate doesn't mean you're not right!...... It troubles me (for which, read, scares me rigid) that unless patients have every one of the "classic symptoms" for an illness, ergo they're deemed by many clinicians nowadays, to be well.

And yet way back in 1980 when I was first referred to an Endo, it was because my GP noted to my motley trio of symptoms: clicking jaw, leaky belly button, runny eye, but used his intellect/experience to look beyond it (saw oedema perhaps) and knew something was wrong.

I do hope you can make progress with the Sjogren's symptoms soon

[Hidden in reply to Hidden]

By the way, (and by way of light relief) the Endo I was referred to told his students to note that "this patient has just entered the room wishing us a cheery good morning even though she has one foot in the grave" before telling me that if it was my lot in life to eat only a dry crust, and drink only water, and still put on weight, so be it ..............

[puncturedbicycle in reply to Hidden]

Words fail me.

I'd like to see a medical study on doctors and hubris and how it affects their logic and state of mind.

[puncturedbicycle in reply to Hidden]

Omg, I also have the clicking jaw and leaky belly button. Are these meant to be Hashi's symptoms?

You've confirmed what I thought about the consultant.

Many thanks. I hope I don't have it, but I'd like to know I don't have it rather than being told I can't have it because I don't have the sicca symptoms.

Have you been tested for the antibodies? All your symptoms sound like you should be, esp with Hashi's and Raynaud's. Not that the abs are 100% - you need a good clinician to diagnose (good luck with that ) as many people don't have the abs.

[Hidden in reply to puncturedbicycle]

No, I can't find any link between jaw, belly button and thyroid.

I know what you mean having the facts rather than just an iffy conclusion having been reached. Keep at it!

No, I've not been tested yet for antibodies but its on my list. No one has ever mentioned the link with Raynaud's to me and I've always just lived with it as it is primary, rather than secondary to lupus.

[edysia2 in reply to puncturedbicycle]

Hi punctured bicycle I have just came across this post and your comment. I am sorry that you are unwell I hope you are getting better now. I wanted to ask yo: why do you think you suffer from Sjorgen's? . What symptoms of yours makes you think of Sjorgen's. Thanks . E xx