Feeling Dreadful -don't know which way to turn now!

[Sutton]

Firstly apologies for the long post --

I had a hip replacement 2 months ago, since then I have felt really dreadful. After surgery I was quite ill with severe fibromyalgia symptoms, hurting everywhere particularly bad rib pain and also had trouble with my breathing/tight chest etc., as well as the pain from the actual operation ! After seeing several doctors my named doctor diagnosed costocondritis and prescribed Naproxfen (with a tablet to take to avoid gastric problems ). I cannot usually tolerate NASAIDS as cause problems with diverticulitis.

I also had to see a respiratory consultant follow up appt for my sleep apnea and CPAP machine. I explained the continuing chest pain/breathing problems and he examined me and said I had undiagnosed chronic asthma! Yet another health problem to contend with!! He prescribed a preventer puffer twice a day and ventolin to use as required.. He said NOT to take the Naproxfen as this would make the asthma worse (so go back to Codrydamol for pain!).

My dr also referred me to a Pain Management consultant for the ongoing severe pain (Ive had for over 12 yrs and it has got progressively worse ). He felt that I was doing everything possible to help my symptoms -(I have had to learn to pace myself -use TENS machine, gentle exercising, heat pads, ice pads, rest when my body tells me and take pain killers when nothing else works etc.,) But has recommended 6 Hydrotherapy sessions and presecribed Pregabalin for the pain starting with 25mg at night increasing by 25mg each week (am & pm) to a maximum dose of 300mg daily?!!

So last 2 weeks I've used the puffer twice a day and taken Pregabalin 25mg at night and then another 25mg in the morning this last week. I have felt even worse !!

The puffer gives me a horrid taste in my mouth and my chest still feels tight and painful - and I still get breathless after hardly any movement. I cannot sleep and keep waking throughout the night feeling really hot, throbbing all over burning sensations in my legs and feet and muscles in chest and sometimes arms and hands. I feel really exhausted most of the time and the pain continually seems to flare on and off throughout the day.

I just dont know what to do for the best, whether to take these pills or not - or use the puffers as I really feel deadful on and off all the time - My left breast feels sore to the touch and both seem to have got bigger too -(I cant bear even the pressure of my bra on my ribs or shoulders either) have pulsing under my arms and sometime wake with my neck glands feeling swollen. My muscles each side of my spine are very painful too.

I am about to ask the dr to refer me to the rhematologist again as I feel these symptoms need to be looked at again - maybe Lupus related I'm thinking???

Im sorry for the long long post - but all sorts of things are going through my mind - at the moment - all i want is to have a day or a few days when I feel relatively normal without pain or horrid sensations. (also headaches on and off too!)

I now have recent blood test results - so could someone please try to explain to me what they think is going on ? Many many thanks in anticipation!

22nd May 2014 - by endocrinologist - no longer seeing him.

24 hr urine volume (XE2mw) -------- 2340 mL

Serum C reactive protein level (XaINL) 5 mg/L (0.0-10.0)

Erythocythe sedimentation rate (XE2m7) 17 mm/hr (1.0-15.0) above range

Chromogranin A 2.6 nmol/L (0.0-6.0)

21st November 2014 - doctor

(Ive posted only the abnormal results as there are so many)

Mean cell haemoglobin concentration (429..) 314g/l (320-350.0) below range

( all other blood counts were in range)

Clotting tests

International normalised ration (42QE) 1.1. -outside reference range

(at this time I was on anti coagulants following surgery- now finished)

Liver function

Serum alkaline phosphatase level (XE2px) 140 iu/L (35.0-104.0) Above range

Thyroid function test TSH 0.80 mIU/L 0.3-3.94)

On T4 adequate replacement suggest repeat in 1yr

FT3 is not indicated when on T4 replacement !!!!!!!

Serum free T4 Above range 22.4 pmol/L (12.3-20.2) Outside reference range

Serum free triiodothyronine level 5.0 pmnol/L (3.7-6.7)

Vit B12 level 615ng/L (191.0-663.0)

Any thoughts would be greatly appreciated - thank you all - hoping youve all managed to have a Happy Christmas without too much pain or discomfort!!

[shaws]

I am sorry you have had a very painful time. Have been diagnosed as hypothyroid and are you taking levothyroxine?

[Sutton in reply to shaws]

sorry Shaws Yes about 7yrs ago now on 125mg - just reduced from 150 mg about 6 weeks ago !

[shaws in reply to Sutton]

No wonder you are feeling so unwell, adjusting medication according to the TSH is wrong. Unfortunately, that's one thing the doctors/endos fail to understand. They are ignorant of how to raise our metabolism so that we feel well, although I know definitely of the complications of RA.

Because hypo affects everything from head to toe and being undermedicated causes joint/muscle/stiffness and pain too I think it best if you concentrate on trying to improve your hypo although it wont be easy.

First adjusting medication according to the TSH is WRONG when they ignore the patient's symptoms. Some of us need a suppressed TSH to feel better. If we had thyroid cancer doctors have no worries about keeping it suppressed, and the patient is not injured.

If you email [e-mail] and ask for a copy of the Pulse Article and read question 6 for yourself ignoring the last para as that's what's in most of their minds (I believe) when patients keep complaining. We complain because we are suffering but not getting treatment which we deserve and doctors are prevented from using their initiative due to the guidelines. Two cases in point is Dr Skinner and Dr Peatfield.

In the following Dr Lowe's main point is that we are underdosed.

web.archive.org/web/2010073...

Read first two in this link, particularly the second:

web.archive.org/web/2010103...

web.archive.org/web/2010103...

Excerpt from following link:

Dr. Lowe: I am sincerely sorry you're suffering needlessly—as millions of other patients are—from the ineffectiveness of T4-replacement. As you may know, we know have substantial evidence of a truly tragic phenomenon: many—perhaps most—patients who undergo antithyroid therapy and then use T4-replacement have chronic, often debilitating, health problems. By starting T4-replacement five years ago, you unfortunately joined this multitude of patients living in doctor-induced misery.

From your own experience, you obviously know that fatigue and widespread pain are among the chronic hypothyroid symptoms that can plague these patients. It has become fashionable for doctors to diagnosis the pain and fatigue as "fibromyalgia" and "chronic fatigue syndrome." These are misdiagnoses, of course. An accurate diagnosis is the chronic hypothyroid symptoms of pain and fatigue caused by the ineffectiveness of T4-replacement.

Because you are hypothyroid, you most likely won’t have to find a doctor who’ll treat you with T3 alone. Most of our patients who became hypothyroid after antithyroid therapy don't use T3 alone; the majority fully recover their health using T4/T3 products. The particular product doesn’t matter; it may be Armour, Nature-Throid, Thyrolar, Westhroid, or over-the-counter desiccated thyroid. In our experience, all of these products are generally more effective than T4 alone.

web.archive.org/web/2010103...

We have to educate ourselves if we want to improve our condition.

[Sutton in reply to shaws]

Thank you so much for this - Shaws I will read & digest before I go to my next Dr appt.

[faith63]

People with Hashimotos/hypo, have high levels of inflammation, problems with joints and misdiagnosis of Asthma, which inhalers don't help. Sore swollen breats and hot sweating spells, sore muscles and joints..all common in hypo/hashi's. You look like someone who has autoimmune Thyroid issues and have not been properly treated.

[Sutton in reply to faith63]

Hello Faith - thank you

how would I find this out please ?? I'm going to make appt to see Dr asap so I could go armed with details - she is very good & has referred me to the above specialists very quickly

[Spareribs in reply to Sutton]

You poor thing, I hope you find some relief soon.

Most Thyroid disease is autoimmune 'Hashimotos' (or Graves if Hyper) you could ask for thyroid antibody tests to confirm this, but the treatment is the same - LevoThyroxine.

(main antibodies are thyroid peroxidase TPOAb, thyroglobulin antibodies TgAb, and thyroid stimulating hormone receptor antibodies TRAb). Some find a gluten free diet helps 'dampen down' the autoimmune response.

As well as B12/folate, I hope you've had the usual tests for iron, ferritin & Vit D too.

(It's worth eliminating low Vit D anyway, it can take months 'tho - 'Costochondritis' was mentioned when I had ribcage pain/short breaths). J

[Sutton in reply to Spareribs]

Hi again - I forgot to mention I am taking Vit D 800 per day as I was low. I've had the others checked & will post results when I can. Thank you

[Spareribs in reply to Sutton]

Hi Sutton - I know Vit D doesn't sound like much but it was the difference between surgery and not for me...

the dosage would depend on your existing levels, but it took 3 months at 4000iu daily drops for pains to ease for me.

If you're breathless as well there is a recent informative post - I will try & find it. J

[Spareribs in reply to Spareribs]

healthunlocked.com/thyroidu...

[Sutton in reply to faith63]

Would you therefore suggest I stop taking the inhalers & pregavalin as they seem to make things worse ?

[faith63 in reply to Sutton]

If my meds were making me worse, i would wean off of them. That is what i would do for myself. It looks like your meds aren't converting..t4 to t3, indtad going to reverse t3. I was in your boat and i got off all t4 meds and am on t3 only. I am doing much better, but not great.

[silverfox7]

I am hypothyroid and had a hip replacement 5 years ago. Sorry sorry that you don't seem to be bouncing back. I also had a major problem, a PE just after I came off anti coagulants but sounds as though you were on them longer than I. I had a spinal block but I have read somewhere on here that General anaesthetics.can interfere with thyroid meds plus you have also had your dose lowered so I suspect you aren't taking enough at the moment. Your FT4 says adequate which makes me think it isn't high enough. I'm not familia with your other problems and don't know if they would be helped if you could exercise more or not but feeling tired won't help exercising. I was too tired to do the given exercises or really the number of repeats. I was also snowed in which made me more anxious as well. I was watching a lot of televion in a not too comfy chair but every time the adverts came on I walked around the house or did a few of the recommended ones and as I got stronger I could do more. In hospital with the PE I picked up the Norovirus so was barrier nursed. so energy levels were really low but I just did what I could but worked at very small increases. I hope you soon start making some progress but don't get disheartened if you are taking longer than you would have expected just try your best.

[Sutton in reply to silverfox7]

Hi Silverfox - thanks for your reply - I also had a spinal block without any sedation because of my sleep apnea - it was felt to be too risky due to my breathing difficulties when Im asleep. Whilst I was in hospital several nurses/doctors who where treating me kept saying 'Oh youve had a clot in your lungs - but I questioned this as I wasn't told anything about it - on speaking to a staff nurse teling her this - she said that it had been a mistake and would make sure that it was taken out of my notes?? I did have several ECG's tocheck my heart and also a ultrasound on my calf muscle on the same leg as my hip replacement - so was assured that all was ok. I've recently also had a chest Xray to check my lungs because of the pain which was also clear. But It does make you think ?

My symptoms sound very much like yours with regard to the exhaustion and problems with exercising as I cannot do very much without breathing problems and tiredness either and also because of my weight which I cannot shift either. I've also been referred to a Why Weight programme which I am starting in the New Year although Ive been checking my diet for a few months and seeing a dietician as well.

I too have learnt to pace myself and rest when my body tells me (I dont sleep well and regularly have to get up during the night). Thank you again for your kind reply - but it is hard not to get disheartened when your doing all your told but still suffering a lot of pain (and pills etc., seem to make things worse!)

But I try to keep cheerful and continue to do what I can - but Oh for a few days relief !!!

sending Best wishes to you too.

[silverfox7 in reply to Sutton]

I must admit the thought of a clot went through my mind which is why I think I wanted to share that. I have to say it was the worst pain I've every experiences and it one point I could even lie back on the pillows breathing was almost impossible to till I hit on the idea of breathing using my diaphragm as that kept my thorax almost stationary. They gave me a X-ray and followed it up with a CT SCAN. I had no end of tests to see if the op was to blame or anything else and final I had a double consultant appointment to tell me the good news. I spotted my CT scan on the scene so asked about it so they showed it to me-an enormous clot hovering in one of the exits from my heart-the severe pain was it passing through then lots of little clots in both lungs which made lying back so painful so lucky escape there. It does sound as though you has something but possibly too small to give too much of a problem or may be someone misread the notes that they had been looking for one and assumed you had one. With your medical problems though and the stress it can't have been plain sailing. It certainly won't have helped your recovery. Thank you for your good wishes and I hope you soon start to feel better all round as well. Take care

[Fruitandnutcase]

You poor soul, you have got so many things to contend with. It just sucks doesn't it. Can't help with a lot of your problems but you should try a 'spacer' with your inhalers. I was given one on prescription, but I'm sure you could buy one from a oharmacy. I think there are different types, the one I've got is quite small but years ago my son had one that was the size of a thermous flask.

You shake the inhaler, spray a measured unit into the spacer thing then inhale it through the spacer ( don't know why!) hold your breath with your mouth shut for a while then breathe out again then take your second puff the same way. My pharmacist says I should be rinsing my mouth out with water after I use my inhaler - and spitting the water out - not swallowing it like I do but I hardly ever do that. I often take a drink and swill it round my mouth but that's about it.

I know they changed how the produced inhalers a few years ago to make them more environmentally friendly and after that one of mine tasted absolutely disgusting - think it was the blue one which is now called Clenil. Eventually I got used to it though. Fortunately I find if I use my brown one regularly and properly I don't often need to use my blue one.

Just read that you've had your levo reduced. I'm not on meds at the moment - remission from Graves - but when I was and needed more levo my body sure let me know.

Good luck anyway and I hope you can get a few days when you feel good. x

[Sutton in reply to Fruitandnutcase]

Hello Fruitand nutcase

I do have a spacer for the Ventolin and do what you have suggested when I feel breathless (dr says up to 2 puffs 4 times a day if needed) but I dont usually use this amount. The brown preventer is automatic you lift the catch up and just inhale it - I also rinse my mouth with mouthwash afterwards too (2 puffs twice a day ). But it still gives me horrid feeling in my mouth and tongue. Perhaps its because it is still new to me? Although Faith63 above says that is sounds like I might have hasimoto's and that inhalers do not help?

It is all a bit confusing and I still dont know which way to turn.

But thank you for your advice. and best wishes to you too.

[Angel_of_the_North in reply to Sutton]

I actually do have asthma, but a few years ago I got really breathless (not like a normal asthma attack) and inhalers made me worse. It was severe B12 deficiency. Fixed that and the breathlessness went away.

[Sutton in reply to Angel_of_the_North]

Hi Angel of the North

Thats worth knowing thank you - I do take one B12 tablet a day (self medicating) from holland & barratt - not sure of the strength ( my blood test in November as above did look ok though).

[Sutton in reply to Sutton]

Ive just checked Vit D pill is 1000mg (Holland & Barratt -Jarrow) if that makes any sense. Maybe I should now take two a day?

[helvella in reply to Sutton]

Almost makes sense. Though for vitamin D, that would almost certainly be 1000 IU (International Units) rather than mg.

1 microgram (mcg) of vitamin D = 40 IU

That is very likely not enough. Have a read of the booklet mentioned in this post:

healthunlocked.com/thyroidu....

Rod

[Sutton in reply to Sutton]

Ive just checked Vit D pill is 1000mg (Holland & Barratt -Jarrow) if that makes any sense. Maybe I should now take two a day?

[Fruitandnutcase in reply to Sutton]

Sounds like your brown inhaler is maybe a bit more modern than mine. Hopefully you'll get used to the taste. Years ago I remember someone saying to me 'if you can taste it, you're not doing it right' don't know if that's true or not. Think it just meant if you got a mouthful of the stuff then you weren't inhaling it correctly. I didn't use my nasty one for ages because I hated it so much but eventually I got used to it.

I was told I could double up my dose if I got wheezy, then I got into bother when they discovered I was putting all the puffs in the spacer at once and taking them all at the one time.

Not sure what was so bad about that method but I was sent for a retraining session with the practise nurse and having seen the error of my ways ( well I'm not sure I have ) I now do each puff one at a time

[Sutton in reply to Fruitandnutcase]

Yes my neighbour said the same thing & said she will help me check I am doing it correctly - also that i should check with the pharmacist too - so perhaps ths will help - many thanks again

[Angel_of_the_North in reply to Fruitandnutcase]

I can taste the salbutamol (generic ventolin) inhaler if it is one of several brands that use ethanol. Tastes like rotten fruit. Can't taste the real branded ones (which use something else). I've been using an inhaler for more than 40 years and do know how to do it correctly.

[Pepekins]

You poor thing. I don't have a thyroid and through loss of bone in hips also had a hip replacement 3 years ago and it was fine, I don't realise I have had one now. People on this site will help you so much, so don't dispair. Many suggestions will be made and it will be up to you which you decide to follow, but the great things is everyone will be trying to help and you won't be struggling alone. Very best wishes.

[Sutton in reply to Pepekins]

thank you so much for your kind reply Pepekins - I have posted before and found the suggestions very helpful - its just this has been going on for so long and doesnt seem to be getting any better - I just wish for a little respite from all the symptoms. Still I'll keep soldiering on and try to keep cheerful - with all the advice given here I will now be able to go armed with knowledge to my doctor.

best wishes to you too

[shaws]

The first question on this link may be helpful:

web.archive.org/web/2010103...

[Sutton in reply to shaws]

Very interesting - thank you Shaws - I did try T3 20mg with 75mg T4 last year - prescribed by an endrocinologist (private) but it made me hyper so he reduced the T3 to 10mg - this was still too much and still made me feel like I was rushing inside and palpitations. After this change he said that it didnt suit me and reverted back to T4 only. He then discharged me back to my GP - and here we go again - back to the same problems again!

i have a small amount of T3 left - Im wondering how do I go about trying again for myself? Can you advise how much I should take as a starting dose - Im on 125mg levothyroxine at the moment.

although as I now have a new named dr for all my conditions who is very good - she might prescribe if I ask her.

[Polaris]

Hello Sutton. I'm so sorry to hear you are feeling so unwell. Reading through your post, I was struck at how many of your symptoms could be linked to B12 deficiency, even though your B12 test result would seem to indicate otherwise. This is a link to Dr Chandy's B12d.org site, which might help you assess symptoms:

b12d.org/b12-signs-symptoms...

You may already know this, but anaesthetic in surgery and dental injections inactivates B12 and will adversely affect anyone who is already deficient. This, and learning that B12 decreases with age, was what especially alerted us to my sister's deficiency - all her symptoms became much worse after dental injections, even though her B12 results were supposedly "normal" ! Here is an extract on tests from "Could it be B12?" :

"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Doctors frequently misdiagnose B12 deficiency, ascribing their symptoms to pre-existing conditions, and this summary from the latest BMJ document might also help convince your GP if B12 injections are needed.

" * Vitamin B12 deficiency is a common but serious condition.

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques,such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay. "

Very best wishes

[Sutton in reply to Polaris]

Thankyou Polaris - Very useful information - I have so many of the symptoms listed - I will go armed with this at my next appointment - I do take B12 myself (from holland & barratt) but am not really sure of the correct amount I should be taking ?

[Flower3 in reply to Sutton]

You can't overdose, if it's too much it will leave your body through urine.

I take 1000mg sublingual when I wake up and 1000mg sublingual in the evening.

You can take a lot more vitamin D, I take 3000IU every day. My vitamin D level was 30 and aftet a few months on 2000IU it was 75. So I upped my dose as I want it around 100. It's safe and you will need it.

I wish you will feel better soon, take care.

[Sutton]

Thank you Sandy - I do take 800 Vit D prescribed by the dr - could you advise an optimum dose? many thanks

[Polaris]

You cannot overdose on B12. I find the sublingual sprays very effective - Pure Advantage B12 Spray available on Amazon and Boost B12 Oral Soray from many sources.

I forgot to mention that four in my family have Hashimoto's and fibromyalgia. My GP also wanted to reduce my Levothyroxine from 150 to 125 mcg. a while ago but I managed to resist, reminding her that it had taken a long time to be free of cholesterol, heart and other symptoms, and I only felt well on the higher dose.

I really hope you feel a lot better soon.

[Polaris]

Link to the BMJ - Hunt article on B12 def. I mentioned above.

cmim.org/pdf2014/function.ph...

If GP won't read the whole article, it might be worth just pointing out the summary points.

Hope all goes well.