3 weeks ago I received unexpected call from senior GP (apparently I'd upset trainee GP by refusing Amitriptyline) to say he'd looked at my Medichecks results (on previous post). He said I have subacute autoimmune thyroiditis and will not be treated unless TSH reaches and remains at 10 (retest in 6 months) as symptoms are irrelevant. Two days before this I'd made a private appt. with Endo, (no approved Endo within 75 miles of me). Saw Endo this week he said he does not treat under TSH 10 too but thought I had viral thyroiditis despite me not having the symptoms for that and I'm now recovering. He approved of my taking higher than GP's Vit D and B dosage ( I just said I'd looked up NHS stuff not the excellent advice on here!!) as GP's prescription was inadequate by Medichecks results but said their Thyroid results were unreliable! He has recommended GP gives course of Vit B injections and has asked for Vit D IFab APCA TSH and T4 tests. Again all my symptoms are irrelevant but he is referring me to Rheumatologist as my 3 stone weight gain has given me bursitis of the knees. Oh! and the best bit was my previous activity, housework, gardening, allotment and walking my dog was obviously too much for me and had caused my health problems....... I suppose I'm lucky this has only been going on 9 months compared to so many on this forum.
Still battling on.....: 3 weeks ago I received... - Thyroid UK
Still battling on.....
‘Symptoms are irrelevant’ This says it all!! What a frustrating level of incompetence you have had to suffer from your doctors. I hate the sound of it.
GSDowner
will not be treated unless TSH reaches and remains at 10 (retest in 6 months) as symptoms are irrelevant
Modern doctoring! Symptoms don't matter, only numbers. Oh, and why bother with reference ranges because even over range results don't matter anyway, we have to reach a magic number which they decide on before treatment. I despair!
You probably did right to refuse amytriptyline, i'm sure you can trust your self to know the difference between 'don't want to do anything' and 'can't manage to do anything'. It's so B frustrating when they won't take your word for it. i know , and that can end up depressing you , but it's not 'depression' that's the problem when you want to do stuff and cant manage.
At best Amytryptiline would help you sleep, if that's a problem, and at worst it would just make you feel more brain dead than you do now.
And also i do wonder if once you've been prescribed/taken an antidepressant they take it to mean you were depressed whenever they look at your notes in future appointments.
You are going to struggle to get anything more out of NHS at the moment , because not only is your TSH under 2, but your FT4 and FT3 are also looking ok, so technically you're not even classed as subclinical at the moment . All you can say is that the raised TGab's show that you are more likely than not to end up hypo at some point in the future.
I realise that doesn't help with how you are (not) managing to function. But it's hard enough to get them to try Levo based on symptoms when only one of your results is out of range (subclinical),
so long as all 3 of your thyroid results are looking so good on paper, they won't listen to symptoms alone.
I wish i had something more hopeful to write, but all you can do here is test again yourself before they do, if you can afford it, and in the meantime follow up on nutritional/vitamin advice and don't let the suggestion of 'it's all in your head' seep into your head, because that in itself is damaging. Trust yourself , you know how you feel better than they do .
Look after what function you do have at the moment, even though it's not what you're used to, keep doing things in a regular but sustainable way.
I wouldn't take the 'only when TSH is over 10' thing as gospel.... they do quite often treat when its over range but under 10.
Mine was only 5.7 rising to 6.8 6 weeks later ,and my T4 was mid range, but i'd been going in moaning for 9 months and i had TPOab'a of 2499, which i think was what convinced then give to levo.
So keep an eye on your antibodies , they do go up and down.
As for your weight giving you bursitis on your knees, in my experience that's bunkum, I'm underweight and my bursitis came back this year, after my Levo dose was reduced, Coincidence ? maybe , maybe not, but definitely not weight related.
More likely lack of movement because i'd ended up on the sofa too much followed by kneeling on the floorboards without my knee pads on, because i felt too knackered to get up and fetch them.
Sorry you're having such a tough time, it totally sucks, feeling like this doesn't it.
If I walk 100yds I'm incapable for rest of day , luckily my dog is old and is happy in the garden but it means I am unlikely to have another in the future. Knee pads I've been using for about 2 years for gardening etc . My husband has many serious cardiac issues and can only manage his own personal care but the fact I can't even do proper housework is irrelevant too. I was told by Endo its TPO that matters not TGab. As for my mental health I am a naturally bolshy, independent, dry sense of humour type of female, only wear black (no, I'm not a Goth lol) with blue (till I get bored with it) hair and having worked in MH for 22yrs I am NOT clinically depressed just p###ed off with the situation!
Geez, you'd think they'd realise you could recognise depression since you worked in MH.
Being dealt with as 'depressed' when you know damn well that it's not the problem, was (is) the hardest part for me.
I've needed counselling in the past , for completely separate reasons , so i can understand why they see 'counselling' in my notes and go straight to assuming i'm depressed , but depressed people don't wake up feeling pleased to find they feel ok, start a job they are keen to get on with, and then have to pack it in before it's finished and spend 2 days in bed.
I'm not too clear on the TGab /TPOab evidence, except that TGab can be raised in other things aswel, but TPOab specifically indicates autoimmune thyroid problem.
You TGab's were very high though, if i remember correctly, so definitely not a case of borderline/ normal whatever they are indicating.
I always say there’s nothing more depressing than having a useless doctor - and that’s not remotely the same as being depressed! Good luck with it all.
Who cares if you upset the trainee GP it is entirely up to you whether you take their advice or prescription. If I had taken my GP's advice I would probably be drugged on up on antidepressants and seeing a counselor for my depression. The only time I have felt depressed is when I wasn't getting any treatment for my thyroid disease. Some of these GPs dish out antidepressants and painkillers instead of treating what is actually causing our symptoms.
What amuses me is that I am offered tricyclics, SNRIs and SSRIs but refused certain painkillers because they are addictive and might give me constipation!! Hellooooo....I've had constipation for 9 months now and of course antidepressants never cause weight gain and aren't addictive........ I would be clinically obese very quickly being 3st overweight already.
Don't take the anti-depressants unless you really do feel you have zero motivation etc. Once you do, you will forever become a victim of diagnostic overshadowing. Amitriptyline makes you sleep, but (ime) makes your brain go to sleep as well and with continual use disrupts what small ability you have to sleep naturally. Ask me how I know! Its good for the occasional period of severe insomnia.
I honestly despair at what it appears medical students are being taught. It seems they must spend loads of time focusing on depression primarily in a causative sense, with no emphasis on the myriads of physical/hormonal conditions that feature depression as a SYMPTOM. They also do the same thing with sleep. I blame the DSM psychiatrists manual for that.
My TSH was 11 before I was given any levo. And then it was only at 25mg. I have heard a doctor say 14 isn't too bad and not a cause for concern and heard from others that their GP thinks 10 does not require treatment, so your experience is not uncommon.🙄
Current doctors view is TSH 4.9 (the lowest I've managed) requires no increase in levo.
You can buy levo online if it was helping you.
FERRITIN 59.8ug/L 13-150
VITAMIN B12 - ACTIVE 46.4pmol/L >37.5
VITAMIN D 41.3nmol/L 50-175
TSH 1.3mlU/L 0.27-4.2
FREE T3 5.51pmo/L 3.1-6.8
FREE THYROXINE 16.2pmol/L 12-22
THYROGLOBULIN ANTIBODIES 909 klU/L <115
THYROID PEROXIDASE ANTIBODIES 38.7klU/L >34
Medichecks tests a month ago showed low B12 and vitamin D
No folate
High TG thyroid antibodies and slightly raised TPO antibodies
Thyroid levels look fine
High TG antibodies can be linked to Pernicious Anaemia
healthline.com/health/antit...
Have you had testing for Pernicious Anaemia before starting on B12 injections
You need folate tested too
Low vitamin D
GP should prescribe 1600iu everyday for 6 months
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, you may need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
With your Vit D, are you also taking it's important cofactors - magnesium and Vit K2-MK7?
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
I am having Vit D retested on Monday 26th along with PA tests. Endo writing to GP about injections so tests will be done first. I have been taking Better You spray with K2 mk7 and using topical magnesium since you last advised it, also their Vit B complete. As I'm paying for tests I could ask them to add folate? Endo wants "his" lab results so they are accurate, Medichecks lab could be "anyone, I've never heard of them" apparently.....
I worked in MH for 22yrs, mostly severe and enduring illnesses often with forensic drug and alcohol issues. I will NOT be taking any antidepressant. I'm lucky I don't financially need to work so I can rest/sleep when I need to but the complete disintegration of MY "normal" life is what frustrates and annoys me.
So sorry you have joined the band of thyroid patients who are/have been treated totally inadequately by useless medics who know nothing more than what they have been taught (often wrongly) in the minimum of thyroid centred lectures.
Day in, day out we see a steady stream of posts highlighting this problem...sorry it just makes me see red! It took me over 40 years (of my 75) to get to the bottom of my ever declining health. The only people who had a clue were the experienced and knowledgeable members here who have supported me through to recovery
Symptoms are highly significant and it seems clear that you need more than vits B12 and D....important as they are, and your medics should not be pedalling such nonsense. They are making you unwell!
This list should form part of their clinical, evaluation in addition to lab results
thyroiduk.org/signs-symptom...
How do they think, perched on their high horses, that medics of old diagnosed patients before testing was developed..... SYMPTOMS! I don't suppose you have read AJ Cronin's novel The Citadel...it features such an example.
A TSH of 10 is far too high, for good health it should be close to 1
Currently, your FT4 is too low at 42% through the relevant ref range and FT3 at 66.05% would benefit from being raised
Both should be close to 75% so, you have room to add some hormone.
It looks as if you have no conversion problems which is good but you do have Hashimoto's. Many members benefit from a gluten free diet.
You need to be medicated with levothyroxine, this will raise your FT4 and lower your TSH to better levels
My thyroid journey has been long and complicated but I've now lost 3 stone, lost most symptoms and am well again! That would never happened without this forum!
You were right to refuse Amitriptyline, medics are far too quick to label poorly treated thyroid patients as neurotic and stressed and it looks as if the next generation are no better......poor lambs, instead of being upset they should do some homework! It's a wonder they didn't suggest the usual mantra of "more exercise and a healthy diet" with a diagnosis of fibromyalgia and/or chronic fatigue syndrome!!
Anyway apologies, I'm ranting again out of sheer frustration!
Request a trial of levothyroxine - see another GP if necessary - 50mcg for 6 weeks then retest and adjust dose by adding 25, until you improve.
They have nothing to lose and you have a lot to gain.
If that fails take control, read much, test privately and self medicate!
We all understand how you feel
Good luck
DD
Yes , trainee GP said I have Fibro and CFS (they are the same thing apparently) and I am currently doing a food diary despite already putting in writing my diet (no refined sugar, no processed food etc). I have now twice been refused Levo and have had appts/telephone appts with all the GPs in my practice. I was laughed at when I said an elderly ex-work colleague asked me how long I had a goitre. Yes I've read The Citadel and listened to it on Radio 4.
Just to be clear - and I don't mean to split hairs, but FMS and CFS are not the same thing, and strictly speaking CFS is a political construct made up by a particular cadre of researchers (with strong psychiatric bias) funded by insurance industry. ME on the other hand is what it more properly should be called. You can have both FMS and ME as they are separate illnesses and if you have the misfortune to have both then you will be extremely severely affected. Yet again this is something the medical profession isn't trained about in medical school and is therefore happy to bandy the terminology about as if it is interchangeable.
That is shocking!
Research shows evidence that low T3 can be the cause of CFS symptoms!
frontiersin.org/articles/10...
They are the same in that they are both syndromes, not diseases, and basically just a collection of symptoms
Like you I was diagnosed with both FM and CFS.....was never convinced of that!
Perhaps this paper authored by experts in the field might give them a nudge
bmcendocrdisord.biomedcentr...
Can you request a referral to an endo......but most are diabetes specialists not thyroid specialists!
Fingers crossed.
I saw private Endo this week, no help apart from request for PA tests. There are no Endos on the recommended list within 75 miles of me. NHS Endo GP spoke to on phone for advice, apparently said there is "nothing wrong" with me, exact words of GP.
Well given that remark 'nothing wrong' you may as well self treat, learn (more than your cr@ppy GP practice will ever know) about your condition on here, join Thyroid UK, and TPAUK and source your own meds. This is what I've been doing for the best part of a decade. It's expensive and sometimes difficult but at least I have a bit of a life and I'm in control of my own destiny...
I can still recall my absolute disbelief in discovering that despite all of your indicators and more, my GP left me on a starting dose of levo and told me to go away and rejoice - I was well, now, I was in range. And furthermore that throwing £££ at it didn't help any. I don't know what I'd do without the wise people on this focum, sometimes. It beggared my belief that anyone could be dismissed as fine, when feeling so ill.
And regarding your declinature of anti depressant meds...GPs are supposed to adopt a consultative approach, not force meds on those who know the suggested solution isn't right. If this 'trainee' (are such even allowed to see patients unsupervised? Is that wise?) GP became 'upset' at your declining his offered sweeties, she/he still has a lot to learn. Talk about if the only tool you have is a hammer, everyone needs a wallop...
Forge on. I've never lost the weight I put on whilst listening to my asshat GP and a so called hormone specialist in Wimpole St. Had to ramp up my level of acceptance with imperfect health. Off for a nap - which at least I'm free to do, now I'm in my 60s and dancing to the beat of my own drum.
Best to you xx
Before blood tests were introduced, to replace the knowledge of all doctors who knew all clinical symptoms of hypothyroidism, we were diagnosed upon clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones). If we improved we were hypo and continued on NDT which was the first and original replacement which meant we no longer died due to hypothyroidism. NDT was the first replacement hormones which saved our lives since 1892 onwards (unfortunately it has been withdrawn in the UK due to misinformation by those we'd think were experts).
Those doctors who are supposed to be 'experts' in dysfunctional thyroid glands are no longer experts. Now it is the results of blood tests alone that are used to diagnose/medicate.
Why is it that they can prescribe Amitriptyline that has the following symptoms:-
3. Who can and cannot take amitriptyline
Most adults (aged 18 and over) can take amitriptyline. Children aged 2 years and older can take it for some types of nerve pain.
Amitriptyline is not suitable for some people. Check with your doctor before starting to take amitriptyline if you:
have ever had an allergic reaction to amitriptyline or any other medicine
have a heart problem – amitriptyline can make some heart problems worse
have a rare blood disorder called porphyria
have liver or kidney problems
have epilepsy – amitriptyline can increase seizures or fits
have ever taken any medicines for depression – some antidepressants used rarely can affect the way amitriptyline works
are pregnant, trying to become pregnant, or breastfeeding
have an eye problem called glaucoma – amitriptyline can increase the pressure in your eye
have thoughts about harming yourself or ending your life
have type 1 or type 2 diabetes
If you have diabetes, amitriptyline may change your blood sugar level. If you usually test your blood sugar levels, you may have to do this more often for the first few weeks of treatment. Talk to your diabetes doctor if the reading goes too high or low.
nhs.uk/medicines/amitriptyl...
I'd request your doctor to test TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. (Probably wont but may do a few of these. You can get them privately if you wish and you can get a link to the private labs.)Make sure you are well-hydrated before blood draw and if you were taking thyroid hormones you'd allow a gap of 24hours between it and test.
What you need is TSH, T4, T3, Free T4, and Free T3 tested. Doctor should check B12, Vit D, iron, ferritin and folate.
Post results, with ranges, onto a new post for comments by members.
GP will only retest TSH and T4 in six months, nothing else. Private Endo will only test TSH and T4 as my Medichecks results were all "normal" but wants to test for PA , B12 and D to get Vit D and B12 levels up, I'm doing them on Monday. Medicheck results from September are in previous post. The Amitriptyline was pushed on two occasions at me for nerve pain, common side effects are weight gain and constipation; I have already gained 3st and have chronic constipation!
Yep I refused amitriptyline last year for severe sleep deprivation- my friend has been struggling to reduce hers down for years and I just didn't fancy it. It now looks likely that I may have UARS -upper respiratory resistance syndrome. Any sedatives can be very bad for that so I'm glad I didn't take it. Raising my chronic 'low ferritin without anaemia' has helped a lot.
I'm glad you've made the right decision. I think it is best to use caution as some doctors - just to keep us quiet - might offer medications that may not suit us.
I'm also glad you've managed to feel better by raising your ferritin alone.
Yes, I actually go into deep sleep now and was able to refuse Ivabradine to slow down my crazy heart rate spikes. But health very complicated and I've just been told that my pituitary specialist thinks I have viral thyroiditis, from a year ago which would explain a lot...
I refused an expensive new MS drug 19 years ago, much to the annoyance of my neurologist and focused on diet/chelation therapy. Just started b12 injections for my deficiency, and most symptoms mostly went in 4 days! Brilliant.
Drugs have their place but I prefer to keep things simple if possible.
Caution and our instinct plays a lot in how we accept advice. If we're not sure about it I think it is better to be cautious.
Yep, I got that too from the endo I saw - I was one of the walking dead with a TSH of just about 5 - in what state would I have been if I had waited until my TSH hit 10??? I'd have been in a box - you can't test for TSH if the patient is dead [last time I checked!!!]. I gave him a list of my symptoms - long - and he wrote back to my GP that there was nothing wrong with me. I am so sorry for what has happened to you.
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