Rheumatology appointment Friday and need some advice.......

[Jules_Essex]

I know this isn't strictly thyroid related but I would really appreciate some help and advice

I've been hypo since I was 21 (now 38) have been on levo for years and am now trialing T3 and recently diagnosed as hashi's. I also have lichen planus and pernicious anemia (have been on B12 injections for a year) so I have quite a lot of autoimmune issues going on that I feel are all connected.

My worst symptom is muscle pains mainly in my legs (my thighs are the absolute worst) but also generalised throughout my whole body - back, neck, shoulders, arms etc etc and things have been degenerating in regards to pain getting worse over the last 2 years. I'm a teacher and have recently reduced my work to 4 days only just to help me live with the daily pain a bit better. I've now broken up from school for the summer and I'm determined to use this time to try and get some answers as I feel like I've reached the decision that I just can't continue with things as they are at the moment with me dragging myself through the daily routine of work and basically not having any quality of life as I have to use all my 'leisure' time to try and rest and recoup from the pain that daily life causes me.

Anyways I'm thinking that I could possibly have some kind of autoimmune connective tissue disorder that is affecting my muscles so have badgered the GP to get this check out and am seeing a rheumatologist in London privately on Friday.

I have previously seen a rheumatologist locally about 18 months old who labelled me as having fibromyalgia without any sort of physical exam and very limited blood tests so I'm pretty dubious about this diagnosis to be honest.

I imagine on Friday the first port of call will be getting thorough bloods taken and I'm really wondering what I should ask for as I don't want to miss anything out. The GP tested some basics a fortnight ago - rheumatoid arthritis which was negative, creatine kinase (which was in normal range) and ESR (which was slightly elevated - mine was 19 and range was 0-7). TSH and T4 were checked and TSH was 'abnormal' at only 0.03 but I know a supressed TSH is usual on T3 so the endo will be monitoring that (I'm back to see him on Monday).

The endo also did lots of bloods for me back in April before I started the T3 and quite a few things were tested there - B12, Serum Folate, Vit D, Iron, Kidney Function, Glucose, Magnesium, TSH, T4, T3. Needless to say everything was within 'normal' ranges and I have print outs of all the results. They also did a morning cortisol blood test which was in the normal range but I've also had a saliva test done for this from Genova Diagnostics myself which shows that I do have adrenal issues as whilst Sample 1 was okay on this test the other 3 were way below range but the endo wouldn't accept these results so I've been treating myself with Vit D, Core level adrenal and some other herbal supplements.

I think I just need advice on what questions I should ask and what I should look to be getting tested in my blood work. Any advice would really be appreciated as I'm so desperate to try and get some answers out of this appointment as I just can't carry on as I am any more

[Jules_Essex]

Also meant to add that I've been gluten free for about 6 weeks as I've read about the link between gluten and hashi's but then I worried that being gluten free might affect this Friday's blood work so I've started eaten gluten again this week so no idea if that was the right/wrong thing to do or if that could affect any results

[Marz]

I think we just need to see your results that are described as 'normal ' so people here can advise you.....

[Jules_Essex]

No problem Marz - thanks for the reply The results I had in April 2014 before starting T3 but whilst on 125 mcg of levo daily were:

Free T4 15.9 (11-26)

TSH 1.11 (0.35-4.5)

Free T3 5.1 (3.1-6.8)

Cortisol (serum) 310 for a morning sample it says range is 138-690

Sodium 140 (133-146)

Potassium 4.7 (3.5-5.3)

Urea 2.3 (2.5-7.8) this is the only result that is out of the lab ranges and highlighted in red

Creatinine 66 (45-84)

Glucose 6.7 (3.3-7.9)

Magnesium 0.85 (0.7-1.0)

Vitamin B12 in excess of 2000 (180-917) (I am on B12 injections so no surprise)

Serum Folate 7.2 (more than 3.0)

25 OH Vitamin D 84.56 (50-200)

Iron 19 (10-30)

Iron binding capacity 66 (45-72)

Transferrin saturation 29 (20-50)

Results I had a fortnight ago since starting 10mcg of T3 as well as 125mcg of levo were:

Erythrocyte sedimentation rate: 19 mm/h (range 0.0-7.0) Above range

Citrullinated Peptide Abs 1.0 u/ml (0.4-6.9)

Anti CCP antibodies

CPEC

Plasma creatine kinase level 159 (38.0-234)

The only thing that looks out of range is the TSH on the second blood test. I'm concerned that the ESR is above range but the GP said that is fine............ I did also have ESR tested in Dec 2012 and then the result was 2 so it does seem to be on the increase but GP said that means nothing as a 'one off'.

[gabkad]

Jules, if your blood test was done 'fasting' then your blood sugar is high. You need your HbgA1c tested anyway to get a picture of what your average blood sugar has been over the previous 3 months. If it's high, then you need a glucose tolerance test done.

[Hidden]

Hi. I have Hashi's (for about 14 years now) and RA plus some other annoying things like very dry eyes and pins and needles/ nerve pain/ burning soles and palms/ circulation issues which my GP says are secondary Raynauds.

I live in the far north of Scotland and see a rheumatologist and he rarely commits where my symptoms are concerned so I'm rarely any the wiser. However my RA is sero negative which means no auto antibodies show up positive for RA ie Rheumatoid Factor, Anti CCP (the most specific for RA) and ANA. Around 30% of RA sufferers are sero negative.

My ESR goes up and down the most of my blood markers - between 17 (once briefly!) and 62 depending whether I'm on an immune suppressing drug or not. I'm told my blood results signal autoimmunity clear as daylight and that photos of my hands from the time of diagnosis show text book RA that could be nothing else. These show the knuckles and joints in the middle of my fingers are dark (bruised looking) and swollen. My protein level is normally at the top of range or slightly over but all else is normal usually.

The feeling of RA, which I don't feel I have at present despite being off my drugs, is as if the fingers and wrists had been broken by being crushed - it really is that bad!

I do have muscle ache just now - mostly in my calves and I do have this burning prickly sensation in my arms and legs - but I think for me this is general autoimmunity somewhere between my Hashis and RA.

I do have a friend with RA who shows nothing in her blood (ESR about the same as yours at the highest). But her symptoms were like mine and the inflammation showed up in ultrasound too - as well as her anti CCP being positive.

A connective tissue professor explained a lot of this to me a few months ago when I sought a second opinion - thinking I may have sero negative Lupus rather than RA. He explained very clearly why he did not feel this was the case. He was brilliant and told me he mainly sees people for whom Lupus and other connective tissue diseases don't show up in their blood. Often this will have been diagnosed as Fibromyalgia.

Good luck with your appointment. If you do have any visible swelling it would be a good idea to take photos in case it has gone on the day. And avoid anti inflammatories for a few days beforehand as these knock the swelling the rheumatogist needs to see/ feel.

[Jules_Essex]

Thanks for the replies The blood test was not a fasting one so I had a bowl of cereal about an hour beforehand so not sure if that changes things?

I don't have any visible swelling in my hands or anywhere else and I'd definitely describe my pain as muscular rather than joint.

I'm just pinning so much hope on this appointment as I feel like I'm reaching a breaking point of what I feel I can cope with

[suzannai]

I have a similar problem but I have a sky high CK level. This led to a diagnosis after numerous biopsies of a mitochondrial disorder. I am convinced however that the mito disorder is connected to the cellular hypothyroidism. I dont know what tests to recommend to you but further work up for a mitochondrial defect may confirm that it is related to the thyroid hormones. Dr Lowe and Dr Starr both treat(ed) pain patients with thyroid hormone so it is possible that you are just undermedicated. I had a urinary organic acids and amino acids profile done aswell as a check for a carrier for Beckets and Duchennes MD but there were negative. Your symptoms do sound somewhat FM like so I wonder again if it is related more to increased lactic acid in the tissues due to poor mitochondrial function due to poor thyroid hormone at the cellular level.

My pain is a deep ache. It feels like I have had an intense work out the night before when I havent. There is pain to touch (light touch) and my legs are very weak and calves are sore. I cant crouch down for example without having to pull myself up with my hands - the doctor that I saw found that I had 30 percent decrease in leg strength compared to controls. He says that this seems classic for hypothyroid including the mitochondrial defect but of course all labs are normal for thyroid function. I am treating with T3 high dose 180 mcg for three months but no changes yet.

[Jules_Essex]

suzanni - that is exactly how I would describe my muscle pain - it's like I've spent hours and hours walking until I'm ready to drop and that's how my legs feel when I wake up in the morning and how they pretty much stay all day. It's like a deep aching down inside the muscles.

My appointment is in the morning so will let you know how it goes - just pinning lots of hope on it.

Out of interest what kind of specialist did you see to diagnose the mitochondrial disorder? Was it a rheumatologist?

[Jules_Essex]

So I saw the rheumatologist yesterday in London and I'm not quite sure how it went really. I didn't get much information from him but he did listen to everything I was saying and wrote lots down.

He does think it's entirely possibly I have some kind of autoimmune connective tissue disorder and that I'm right to want to have this investigated. He took more bloods yesterday (not exactly sure what for) and he wants me to have an MRI of both thighs (as this is where I have a lot of pain) and also is sending me for an EMG. He said that if there is anything abnormal going on something should show up on 1 or more of the tests.

He did say though that if everything is all clear it's not really worth pushing forward to a muscle biopsy as they're quite unpleasant and wouldn't really give any extra information.

He said if everything comes back all clear then I probably have to accept the fibromyalgia diagnosis and just move forward with physio and pain management. In all honestly that does really upset me as I just have this horrid feeling that nothing is going to show up and I'm going to be back in limbo before. When I first got the fibro diagnosis I worked with a personal trainer for a year and did the whole graded exercise thing and showed no improvement - I just found the exercise and recovery time agonising and even the trainer said I wasn't showing the kind of improvements he would expect.

I guess it's just a case of getting all the tests done and seeing how things stand. Looks like most of my summer hols are going to be spent at hospital appointments again