I was diagnosed with underactive thyroid approx 4.5 years ago, my latest blood test shows adrenal failure and thats only because I insisted my doctor to test my cortisol as my symptoms didn't improve. Has anyone been diagnosed with pituitary gland failure as I am wondering if this is the underlying cause and why my health isn't improving?
Is the pituitary gland the cause?: I was... - Thyroid UK
Is the pituitary gland the cause?
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Jackie2402
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SlowDragonAdministrator
If you are under medicated for thyroid it can badly affect adrenals
First thing is, do you have any actual blood test results? if not will need to get hold of copies
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)
How much Levothyroxine are you taking
Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested
Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4 plus vitamins
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are extremely common especially with Hashimoto's
If under medicated or low vitamins adrenals try to compensate, can lead to adrenal exhaustion
Hey SlowDragon, me again, yet more test results and yet more confusion, just to recap I had my first blood tests done at 3.20pm they showed the following, Serum potassium level 5.9 mmol/L [3.5 - 5.3],Serum C reactive protein level 10 mg/L [0.0 - 5.0], Serum cortisol level 156 nmol/L [166.0 - 507.0], Serum free T4 level 10.4 pmol/L [11.0 - 24.0], Serum TSH level 6.68 mIU/L [0.35 - 4.5], Serum thyroid peroxidase antibody concentration 256 IU/mL [0.0 - 34.0], I then had some more bloods taken within 1.5 hours of waking so first thing in morning, these results showed, Serum C reactive protein level 8 mg/L [0.0 - 5.0], Serum cortisol level 332 nmol/L [166.0 - 507.0], Serum potassium level 4.5 mmol/L [3.5 - 5.3], you then suggested I get ceoliac and vitamins done, just had results back and I'm not a ceoliac but more weird results Serum vitamin B12 level 353.4 ng/L [180.0 - 2000.0]
Serum folate level 5.18 ug/L [3.1 - 18.3]
Serum ferritin level 188 ug/L [13.0 - 150.0]
I dont understand the reuslts in all honesty and I have others over and above the ones above that whilst theya re in range they are swinging to either the very bottom of the range or the very top of the range like these
Calcium adjusted level 2.19 mmol/L [2.1 - 2.55]
Serum inorganic phosphate level 0.91 mmol/L [0.8 - 1.5]
Serum total bilirubin level 4 umol/L [0.0 - 21.0]
Serum albumin level 46 g/L [35.0 - 50.0]
Any idea what it all means together?
So has your GP increased your Levothyroxine by 25mcg
TSH is far too high and FT4 far too low. TSH should be around one and FT4 towards top of range.
High antibodies confirms you have autoimmune thyroid disease also called Hashimoto’s
Regardless of negative coeliac test, very very many with Hashimoto’s find changing to strictly gluten free diet helps. Suggest you try it for minimum of 3-6 months. Has to be absolutely strictly gluten free
Vitamin results
Ferritin 188
Ferritin is often high due to Hashimoto’s. It’s fine
Calcium on low side. This suggests vitamin D likely to be low. Have you had vitamin D tested? If not then get tested via vitamindtest.org.uk £29 or ask GP to test
Calcium will increase naturally as vitamin D rises - do not supplement calcium
B12 is on low side as is folate. Extremely common with Hashimoto’s. Taking a good vitamin B complex that has folate in (not folic acid) will help improve both.
Remember to stop B vitamins 3-5 days before any blood tests as Biotin in B complex can falsely affect test results
Rest of results you can ignore
You are fantastic so all pretty much interrelated and all due to lack of treatment from GP, I asked for Vitamin D but they just did B12, maybe there is another result to follow. Not had dosage increased yet as seeing consultant in 10 days and wanted him to see me at current dose and then see what he says.
Your GP has been useless leaving you on only a starter dose.
It should have been increased a long time ago
Sadly your case is far from unique
Thyroid care in this country needs drastic improvement
GP called this morning and was implying that my results arne't that bad and whilst I'm out of range its not by much!! he reckons I'm just being under medicated a little!! Hoping the Edrincronologist is better! Yes you are right they need to stop going by ranges and look at the symptoms as well and stop labelling everyone with fybromyalgia, that would be a start!!
Trying to cover their a**e by sounds of it
TSH of 6.8 is outrageous on Levothyroxine
Lol, I know but he was still maintaining that I was only slightly out and my blood test results weren't bad 
The only thing which was of concern he said was my antibody level and they knew about that anyway and thats why I have been diagnosed with underactive thyroid. Oh well 7 days to wait and I might actually get to speak to someone that does know the difference between their ar*e and elbow I love how its always "your within range", or even if your out of range then its "only by a little" and "blood tests are only an indicator" when it suits, any excuse to cover themselves. He said you have been within range and I said yes but I still had symptoms and no one said then that the blood test is only an indicator they stuck religiously to the results. You just cant win!!
Hi, just wanted to give you an update as you have been so helpful. I saw the Thyroid Uk recommended Endo yesterday. I was half expecting a fight to convince him there was something wrong, but straight away he read my GP's letter in disgust. I then gave him my results and a rough history and how I have been misdiagnosed over and over again. Gave him a list of all my symptoms and he said all were Thyroid related. The day before my appointment my Vit D test came back as non existant, Endo said it was the worst case he'd seen in his entire career and couldn't beleive I am still working. I felt an immediate sense of releif that I wasn't going to be fobbed off again. I obviously have quite a few things wron so he said he's going to deal with the issues in stages as he's not sure what will resolve itself once my Thyroxin & Vit D levels are sorted. So he has doubled my Thyroxin to 100mg and put me on 50,000 IU Vit D tablets for the next 6 weeks. He said he wanted to get my TSH down below 2 and see how I feel, if needs be he will reduce it more if I still have symptoms but he said under 2 and its on the individual. He will consider NDT further down the line. I have to go back in 4 weeks, bless him he extened his surgery another hour so he could see me. You have been an absolute star, I would never have known to have asked for all these tests without you and my GP has only ever tun the TSH & T4 previously. He said the tyyroid meds should kick in within a coule of weeks but the vit D can take upto 3 months before I am where I should be. He found other stuff wrong, I'm nearing the diabetic level, cholestrol not doubt all caused by my GP failing to run some simple blood tests, am still so angry that I have lost 5 years of my life so so thankful for everyone on here and especially you for guiding me.
That's really great news.
You may find increasing up to 100mcg in one go a bit heavy. See how you get on. If it feels a bit too much, you can cut back to 75mcg for couple of weeks, but you may be absolutely fine
With high dose vitamin D you need to also supplement magnesium and vitamin K2 Mk7
Many of us use calm vitality magnesium powder. Cheap and easy to use. Must be four hours away from Levo. Afternoon or bedtime (depending if you take Levo in morning or evening) Best start with low dose (eg 1/4 teaspoon) and build up slowly. Too much can cause diarrhoea!
Magnesium is very relaxing and can help sleep, hence take in afternoon or evening
betterbones.com/bone-nutrit...
easy-immune-health.com/magn...
articles.mercola.com/sites/...
Improving vitamin D will naturally increase calcium. Vitamin K2 Mk7 will help direct that calcium into bones
articles.mercola.com/sites/...
A few people can get pain in bones when supplementing vitamin D. It is apparently due to bones remineralising. I had it quite badly, but it does fade. You would be pretty unlucky to get this too.
easy-immune-health.com/pain...
Please tell me the jump to 100 mg will give me loads and loads of energy I can only wish!!! I have been taking Magnesium for months 250mg a day, was considering doubling the dose as my magnesium level is at the bottom of the range. I tried the magnesium powder that you drink, it was disgusting and made me retch so i now just take a tablet in the evening. I will swap and take my levo in the morning then as I was taking it all at night. I have had really painfull throbbing bones for a few years, they wake me up at night, GP said it was restless leg syndrome, seems not! More like Vit D deficiency, I think my Vit D was 4 or 5 and seems 20 is the lowest level. I'm hoping another few months and I will feel on top of the world!!! I have put on 6 stone in weight, 2.5 stone in the last year, will that just fall off once my metabolism is working or is it going to be a fight still to move it? Worried about my wieght now as I am just under the diabetes level and he mentioned cholestrol. I reember the day that my GP said I had under active thyroid, he said "well its the better one to have out of the two" ie Thyroid & Diabetis followed by "and you get free pescriptions" he sold it to me that I'd be fine if I popped the levo once a day!!!
Your vitamin D was truly terrible. Your GP extremely negligent to let it get that bad. It's well know that low vitamin D accompanies hypothyroid
Medics don't grasp importance of vitamins, especially vitamin D (which is actually a pre-steroid hormone, not a vitamin at all)
I discovered recently, when I got online access to old blood test results, that my vitamin D had been tested in past, result was very deficient, but I was never treated by GP or told even told about it
It takes about 6 months to build vitamin D levels back up fully
Same with thyroid, it's not a quick fix, al, the other systems have to catch up. You should notice improvements after 6 weeks, but it will be ongoing small improvements for months. You may need further increases in dose of Levothyroxine too.
Yes when first diagnosed with Hashimoto's they told me ..."just take this little white pill once a day you'll be right as rain"....
Are you now on strictly gluten free diet?
My Go has never tested my Vitamin D, the only reason they did test it was becuase you advised me to get them to do it.
Re Gluten, I want to stick to the Endo's advice, he said not to change eveything in one go, he sees it as a step by step process, change my thyroid meds, put me on Vit D and then see how I feel, if I change too much in one go then I wont know what is working and what isn't. I will change to Gluten free at some point in the future but I want to see what being on the correct dosage of meds does first.
Yes it's a good recommendation
Only change one thing at a time
Wasn't sure if you had already changed to GF
No not yet, although I wont forget, once the Endo is finished with me I can do things like this myself and then I can see if it makes me feel better or not. I just feela lot more positive now thanks to you.
So you were taking Levo and magnesium together???
Definitely not a good idea
Levo must always be taken on its own on absolutely empty stomach and then nothing apart from water for at least an hour after
Taking Levo at bedtime may be more effective than morning
verywell.com/should-i-take-...
You can take magnesium minimum of four hours earlier.
Then can take vitamin D with fattiest meal of the day, if it's tablets. If using vitamin D mouth spray it can be anytime, as long as four hours away from Levo
All other supplements, especially B vitamins are best in morning, with breakfast
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased
Great thank you, no one ever explained anything like this to me, so I just take a mouthful of tablets each evening before I go to bed. i will change the way I take them in future. I was just given one brand, they have just changed the formula according to the packet. Will see how I get on, if I need to change to NDT then the Endo is happy for me to do so, early days yet as only tried new dosage yesterday, so too early to tell the effects.
Which brand of Levo? Is it Teva?
I was on 50mg of Actavis, but I note the new 100mg tablets are Teva, thats probably becuase I have just moved house and live ina different council region
A lot of people have had bad reaction to Teva. However they are the only lactose free brand. I note you are dairy free, so you may benefit.
But just be aware, that you may need to swop back to Actavis. As endo said, only make one change at a time. So changing brand or increasing dose ideally, not both
Link to other posts including Teva. Not all are derogatory. Some refer to Teva Liothyronine (T3). The search facility is so rubbish you can't just bring up the Levothyroxine posts
vitamin D with fastest* meal of the day
*fattiest
Whoops - spellcheck strikes again! Well spotted
LOL, I understood, Endo said with main meal of the day
Hi Slow Dragon, me again, so I have now been on 100mg of levo for over a month and 50,000 units fo Vitamin D. I dont feel any different really, I find I get a bit of a high the day or two after taking the Vit D, but then I get more and more fatigued towards the back end of the week, today I slept till 2 in the afternoon. Endo sent me for more blood tests last week as he said I should have seen huge improvement by now and I haven't. Cognitive skills are better but physically no difference, he's testing my T3 for the first time plus retesting Adrenals and Vit B as they were both low. Apprently too early to retest Vit D yet. Any idea why its not working?
Anything with thyroid takes a long slow improvement.
Testing should only really be done 6-8 weeks after Levo dose increase. 4 weeks is a bit early
It can take 3-6 months for full effect to work through.
Vitamin D takes about 4 months to fully work through.
Retesting vitamin D after 2-3 months
Getting all vitamins optimal, one step at a time.
B12 and folate both need to be high in range
Ferritin at least half way in range
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Once Levo dose have is high enough to lower TSH to around one and FT4 in top third of range, and all vitamins optimal
As you have Hashimoto's are you now on strictly gluten free diet?
Did GP do blood test for coeliac ?
Most/many of us with Hashimoto's need to be absolutely strictly gluten free
If after all these steps FT3 remains low, then ready to try adding small dose of T3. But not until all other steps done first
Yes they did the test and I'm not a coeliac, Endo is testing my T3 (never been tested before) and retesting a few more that were within range but not optimal. He was also considering moving me onto NDT depending on the results of this test. He's not restesting Vit D as too early. This was the first blood test that I have had fasting for 12 hours and first thing in the morning. He still hasn't ruled out adrenal issues though, he wanted to do thyroid/Vit D first to see what effect it would have on the other issues. Not gluten free yet as he wants to take it one step at a time, if he changes too many things in one go then he wont know what is working and what isn't. When he examined me he said I had high colesterol indicators around my eyes, so being tested for that as well and I'm moving towards diabetis, although my GP said "no your not diabetic because I was slightly below the range for diabetis and then said I didn't need cholesterol testing again as I had it done 4 years ago" I dont know why I bother with the GP as its just a numbers game to them. I guess I was expecting too much too soon, however the endo said I'd feel a difference within a month on Levo and I haven't, mind you thats not to say the dosage is correct yet or that I dont have a T3 issue as well as T4. I have now finished my Vit D booster so bit worried as I seem to get a bit of a high after taking them and now I wont even get that as I am now to take a maintenance dose going forward. I've ordered Vit D, Vit B complex, Vit K Mk7 & Magnesium, but cant start on all of them till he says so as obviously he is trying to get to identify the specific issue. All I have been taking so far is the increased Levo & Vit D. I see him again in two weeks so hopefully there might be something in my blood test that shows why I still feel so bad.
You could add magnesium now. There's no point testing magnesium and it helps vitamin D too. So I can't see that would be a problem. May be helpful for vitamin D
articles.mercola.com/sites/...
Magnesium must be four hours away from Levo. Many of us use calm vitality magnesium powder. Cheap and easy to use. Starting on low dose and increase slowly (can cause diarrhoea if take to much too soon!)
then after couple of weeks, adding vitamin K2 Mk7, again that won't cause any obvious improvements or affect Thyroid, but will help send increased calcium into bones not arteries
How much vitamin D are you taking as maintenance dose? Are you using vitamin D mouth spray? Many of us prefer it as it avoids poor gut function
Endo sounds good
Yes, advice on here is only one change at a time, or you don't know where you are
As you know most of us aren't coeliac, but still need to be strictly gluten free
I found this Improved adrenals
Hi, I have my latest blood results back. Conditions were that I fasted for 12 hours and bloods were taken at 9am. Unfortunatly I didn't have time to stop my Levo before the blood tests, so guess that may affect it a little, currently on 100 mg of Levo. Range is in brackets!
Vit B12 = 331 ng/L(197-771), HbA1c DCCT = 5.7%(4-6), HbA1c IFCC = 39 mM/M hb (20-42), Free T4 = 15.5 pmol/L(11-26), TSH - 1.20 uU/ml(0.35-4.5), Free T3 = 4.7 pmol/L(3.9-6.8), Cortisol serum - 885 nmol/L(Morning range (166-507).
TSH seems to be under control now, so does this mean its just a waiting game now till I slowely get better or should I be looking for further treatment? Also the cortisol level seems really strange, last time I had it tested in the morning (non fasting) it was 331 and the range at which they seem to get concerned was less than 300. Now its jumped massivley and is well above the range, so a bit confused by this.
You will probably need further dose increase in Levo, but not yet
FT4 is low, especially if only 12 hours not 24hours since last dose
FT3 still below 5
Many of us need TSH under one
B12 is on low side
No folate or ferritin tests
Ideally test folate before starting a good vitamin B complex (eg Igennus super B )
Remember to stop any Vitamin B complex 3-5 days before any blood tests as biotin can falsely affect test results
Vitamin D will need retesting soon
Are you making sure to take Levo on it’s own, on empty stomach and then nothing apart from water for at least an hour
How are you getting on with Teva brand ?
Ok great thank you, where should the FT4 be? Will a higher dosage sort the FT4 & FT3 or do I need to change to NDT? I did a big order of Vitamins I'm just holding off on starting them until I see the endo. Are the folate and ferritin the iron ones? If so they came back normal other than ferritin which was high on my last test so he didn't run them this time, he only ran the problematic issues.
What do you make of the cortisol? Last time it was tested it was 331 and now its jumped to 885 and is way above the ranges quoted? is this related to thyroid? Looking online I cant see that its thyroid related, its saying cushing syndrome rather than addisons which is for low cortisol. Looking at the symptoms they are very similar to thyroid and I have the the weight gain around the stomach and chest, puffy face and fat lump between the shoulders, not sure though and I dont like diagnosing myself via google but might suggest why my syptoms are still problematic. What worries me is that the swing is so great, but perhaps the lack of levo was pulling the true reading down and now the level is correct as my thyroid is more under control.
I take levo at night before I go to sleep, I have't noticed any difference using the Teva brand in all fairness.
You had large increase in Levo
Best to just sit tight on that dose and retest in another 8 weeks
You don’t want to keep changing dose or cortisol level never settles
Folate is tested with B12 - they work together
Wait and see what endo says
Mention that brand of Levo was changed to Teva
Next step is likely either adding B complex or going strictly gluten free
Hi, thank you for your message its been really helpful. I have spent the last 7 years being told it was fybromyalgia, I was then diagnosed as underactive 4.5 years ago and they put me on 50mg of thyroxine, since then every time I have been to my doctors they have said the symptoms are fybro related but it seems the symptoms are very similar to thyroid. My TSH went from 14 down to 2-3 on the 50mg of thyroxine, however I continued to suffer with all the symptoms. I have been feeling especially ill recently and have just changed doctors, so had a blood test last week and its come back with some abnormalties, the range is in brackets. Potassium 5.9, (3.5-5.3), but sodium normal , C Reactive Protein 10 (0-5), Cortisol 156 (166-507), then says adrenal failure consider Synacthen test, T4 10.4 (11-24), TSH 6.68 (0.35-4.5). I insisted on the cortisol, T3 and antibodies but my doctor sais they dont do the T3 and antibodies. I haven't spoken to the doctor about the results yet so not really sure what it all means. I will ensure I get the other blood test you mention, I dont have an issue paying for them I just want to feel better.
With a TSH of 6.68 above range and FT4 below range you need an increase in levothyroxine.TSH needs to be around 1 or below and FT4 in the upper half of the range. As Slow Dragon has explained FT3 and vitamins are very important .
Thanks Treepie, I have printed out Slow Dragons email, I plan to get a referal next week, and will pay for all the tests to be done.
50mcg is only a starter dose
It should have been increased in 25mcgs, retesting 6-8 weeks after each increase until TSH was one or slightly less, FT4 af top of range and FT3 at least half way in range
Low vitamins are extremely common
Ask GP to test vitamin D, folate, ferritin and B12
You have most likely been under medicated for a long time
This can cause adrenal exhaustion
Suggest you get full private testing ASAP
TSH is far too high, FT4 below range
If you have high antibodies (Hashimoto’s) then likely to find strictly gluten free diet helps significantly
You need dose increase in Levo
Supplementing vitamin C can support adrenals
Also look up adrenal cocktail
It’s a home made Vitamin C drink
Thats great, I have a lot of info to go to the Endo with now! GP has asked me not to change anything till i see the Endo so he can get a full picture of where I am on the 50mg.
Exactly, important to not chop and change before seeing endo
Suspect you are very under medicated
NICE guidelines saying how to initiate and increase. 50mcg is only a starter dose. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
cks.nice.org.uk/hypothyroid...
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Hi Slow Dragon, I received some more results today Thyroid Peroxidase Antibody Concentration is 256IU/ML, range (0 - 34), does this mean that antibodies are undoing the effect of levothyroxin? My GP asked for T3 and other tests but the lab have ignored her and she has told me to get them done privately.
No high antibodies mean the cause of your being hypothyroid is due to Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
So the Hashimoto's causes your own body to make antibodies that are attacking the thyroid. (Autoimmune)
As a result your own thyroid is packing up and we then need Levothyroxine to replace the missing thyroid hormones
Hashimoto's affects the gut and often leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working . Hence so important to regularly test vitamin D, folate, ferritin and B12
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Reducing the antibodies reduces the swings in levels that make us feel so unwell
So strictly gluten free diet often significantly reduces symptoms
make another appointment to see GP and ask for coeliac blood test and absolutely essential to test vitamin D, folate ferritin and B12. You should not need to get these privately
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
thyroidpharmacist.com/artic...
Insist on vitamin and coeliac testing BEFORE seeing endocrinologist
Vitamin levels should be tested and managed by GP (your GP seems clueless)
An endo does not expect to be referred plain cases of Hashimoto's. They are rarely interested in vitamins - though they should be
Your Levothyroxine dose should be increased in 25mcg steps. Bloods retested 6-8 weeks after each dose increase until TSH is around one and FT4 towards top of range
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
cks.nice.org.uk/hypothyroid...
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
You difinitly know your stuff, thankyou for explaining. I will get on now and order more blood tests form my doctor then, she can only say no
If you read my profile. I struggled 20 years.
Though had I been left on just 50mcg I would have been even more unwell.
Only made progress really with help from fantastic support on here
It was the realisation that low vitamins and gluten are often at the heart of it. Gut function and thyroid are incredibly linked
Wow and I'm moaning about 4.5 years. Yes the support here has been fabulous and I feel better able to argue my case now, I cant say I relish the idea of Gluten free, I'm already dairy free after food intollerance tests, but anything is worth ago as I do have horrific stomach problems amongst other symptoms. Did you win your battle with the doctors? There seems to be so mnay people in the same boat, you would have thought with the number of sufferers still complaining of symptoms after treatment that they would have come to the conclusion the treatment is quite as simple as they deem it to be. I hope to god this Endo is good!
Yes I stuck with same endo ....
NHS prescription for T3 and complete support from my GP
GP now recommends strictly gluten free diet for all Hashimoto's patients and tests vitamin levels too
I think my TPO indicates hashimoto, I'm going to see how I feel when they sort the meds out then if I am still felling unwell I will swap to gluten free. Second lot of blood results came back today, they retested my cortisol, CRP and potassium first thing in the morning. Cortisol was 336, so within range, Potassium was 4.5 again within range and CRP was still elevated but lower at 8. I'm guessing by these reaults that this is down to the lab not putting correct ranges for the time of day the blood is taken. Glad I haven't got adrenal failiure, but a little disappointed as its going to be another battle explaining why I feel so bad when my TSH was only 7 and that was based on bloods taken in the afternoon so again worried that will have been much lower in the morning 
A TSH of 7 is massively high, when on Levothyroxine.
It should be under 2. Most on Levothyroxine need it under 1.
The fact you are dairy intolerant shows your gut has been affected
If my TSH was over one I'd be completely immobile. I was extremely ill until Levo increased enough to bring TSH right down.
Yes your TPO antibodies were high, definitely Hashimoto's
Have you had vitamin D, folate, ferritin and B12 tested yet?
Ask GP to test these if not done yet
Why has GP not increased dose of Levothyroxine when TSH is 7 ?
Suggest you see a different GP
Hi, yes booked in for vitamins and ceolic next week. Go hasn't inceased meds as I'm seeign an endo in a few weeks and you had mentioned that its best to have a constant dose in your system. I've suffered this long another coule of weeks wont make any difference
Come back with new post once you get results (and ranges)
Majority or not coeliac but very very many still find strictly gluten free diet helps. Certainly worth trying for 3-6 months
If you are dairy free you may need Teva Levothyroxine or liquid Levothyroxine (very expensive so NHS don't like to offer it)
Teva is only lactose free Levothyroxine BUT many people really don't get on with Teva brand. Has made many very ill
healthunlocked.com/search/t...
Many with Hashimoto's have dairy intolerance
thyroidpharmacist.com/artic...
If it's casein intolerance then apparently that's only cows milk. So goat and sheep (or camel!) is ok as these are casein free
That may explain my stomach then, I'm intolerantt o the proteins so all milk, I'm on soya substitutes, will tlak to the endo about that then, maybe I'd be better swapping to the natural dessicated version instead!
Soya is not recommended at all with thyroid problems, something to avoid
Even avoiding soya lecithin too if possible (hidden in loads of foods)
Lots of posts about soya here
healthunlocked.com/search/s...
thyroidpharmacist.com/artic...
Perhaps you could swap to rice, almond, oat or some other milk substitute
greygoose can tell you about soya
I tried all the others they were utterly disgusting Pre changing food I want to get my dosage right once that is done I will see how I feel and then look to change things one by one so I can see if they are improving my life or not.
Definitely agree only change one thing at a time
Be good to get TSH, FT3 and FT4 tested privately before seeing Endo though they should test these themselves especially if you are seeing them privately
But to get highest TSH you should test as early as possible in morning and fasting
To get lowest FT4 that reflects your true circulating level of Levo, should not take Levo in 24 hours prior to test
So if normally take first thing in morning, wait to take until after blood draw.
If normally take at bedtime, also delay the same
There is currently an incorrect over reliance on TSH. When a patient is on any thyroid hormone replacement the medics should look at FT3 and FT4 levels not TSH
Research into fasting or non fasting tests
ncbi.nlm.nih.gov/pmc/articl...
TSH daily circadian variation
healthunlocked.com/thyroidu...
I had my TSH done at 3.20 in the afternoon, and it was showing as 7 so this would have been the lowest point of the day. these lab ranges are rubbish, did I tell you that I had a 2nd lot of bloods done within 1.5 hours of waking, my potassium 4.5 and cortisol 333 came back within range, although my CRP was still elevated. In future I will book all blood tests for 9am. Although in theory I am still dropping out of the ranges at some point during the day, or maybe the ranges ought to be different dependign on when the bloods are drawn, again cant trust what you are given by a GP!
GP's (and many endocrinologists) say time of day is irrelevant or when you take medication
Fortunately my own endo was more aware and always said don't take Levo in 24 hours prior
I also changed to taking Levothyroxine at bedtime on his recommendation about 8 years ago. Found it significantly better. (Possibly because I never waited an hour after in morning before having cup of tea)
Other people try bedtime dosing and don't like it. Certainly stops snacking in evening as it must be taken on empty stomach and nothing apart from water for at least an hour after
verywell.com/should-i-take-...
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased
I take it at bedtime always have done, depsite having piled on 6 stone in 5 years I'm not a snacker, I guess with such a bad stomach it puts me off eating alot of things due to the consequences, will do re brand change!
Majority of Endo's are completely disinterested or unaware of gut connection causing food intolerances. Or low vitamins
They don't consider it their area of expertise.
UK NHS endocrinologists will virtually never consider prescribing NDT
A few may consider adding T3 in rare cases
But first it's absolutely essential to get vitamins optimal, food intolerances sorted and Levo dose increased so that TSH is around one and FT4 towards top of range
Bloods must be tested 6-8 weeks after each dose increase in Levo. It must be increased slowly. 25mcg maximum increase at any one time.
If FT3 still remains low after correcting all these, only then is time to consider adding T3, but not before
If vitamin levels are too low we can't use T4 or T3.
Hi, this Endo is private and is known for advocating NDT according to the list i was sent, sorry wont mention is name as my post will be deleted In all fairness if they dont get it sorted properly and to my satisfaction I will swap to NDT and start self medicating and controling it myself. I've suffered for 4.5 years I'm not intending to spend the rest of my life like it.
Just beware, with Hashimoto's many of us also do better on Levothyroxine plus small addition of T3.
It's more flexible on adjusting ratio of T3 to T4
NDT is higher in T3 to T4 than we normally produce.
Certainly many of us need both, but sometimes in very precise amounts.
NDT can in some people with Hashimoto's apparently increase antibodies too
thyroidpharmacist.com/artic...
Ok well hoping not have to self medicate, hoping the Endo is as good as they say, self medicating will be final straw but I am determined to get my health back come hell or high water.
We can get prescribed T3 on NHS (I still do) and moving forward more and more patients can and should be prescribed.
It's the 6000% increase in price that's caused the problem.
Big debate planned in parliament on current outrageous price gouging.
See here
thyroiduk.org/tuk/T3-Campai...
Fantastic information pack and letter templates in case you need to push for T3 in future at Improve Thyroid Treatment campaign group on Facebook (new website due soon)
If your TSH was 14 when you were diagnosed, it wasn't a pituitary problem. It's a thyroid problem.
Thank you fro your response, yes that was 4.5 years ago I was diagnosed with underactive Thyroid and now I have adrenal failure, so I was wondering if the underlying cause was a pituitary problem. Slow Dragon mentioned that the Thyroid can cause adrenal failure.
Unfortunately, you didn't click on the green reply button under SlowDragon 's response, so she won't have seen it. But I've alerted her, there.
I think maybe saying you have adrenal failure on the basis of one blood test, might be a little premature. What you should have is a 24 hour salive cortisol test and DHEA test. But, you won't get that on the NHS, I'm afraid. It would have to be private. But, that would give you a lot more information on your adrenals.
Hi thank you. Sorry it was the lab that put on my test result Adrenal Failure, on the Potassium and CRP they just put above higher reference. Saw my GP this morning and now have a referal to one of the Thyroid Uk recommended Endo's, fortunatly I have private medical so should be able to get all the tests done.
Yes, I realise it was the lab. But, I don't have great faith in labs.
I cant say I have much faith in Labs or GP's either. I'm furious I have been left to suffer for years, I just thought my GP knew what he was doing!
Ah, we all fall into that trap! But, unfortunately, they just don't. Most of them make it up as they go along. But, at least you've understood, now, that we can't trust them. There are some people that come on here that still believe the doctors know what they're doing, and we're a bunch of charlatans!
Just got my antibody test result and its showing 256 with a range of 0-34, so even more abnormal results, what makes me so mad is the fact in the past 4.5 years they have not run anthing other than the TSH test. Got a call this morning offering to increase my levothyroxin, said no as Slow Dragon said to keep dose constant till I saw Endo for at least 6.8 weeks, have suffered for 4.5 years another 3 weeks wont change much! i will never trust another GP as long as I live!
I understand exactly how you feel! But the reason, I think, they don't do these tests, is that they know they're not going to understand the results.
Then they should refer to someone who can, there is no excuse, especially in my case as I have private medical insurance so they should have just referred me. To be fair my new GP surgery has been more helpful at least they ran some of the tests I asked for.
Referred you to whom? An endo? You'd probably be worse off with an endo than a GP. The vast majority of endos are diabetes specialists who think that thyroid problems aren't really problems at all. They mess an awful lot of patients up completely, take them off their meds, just to see what will happen, and leave them on rediculously low doses for years. They don't test antibodies - or know what they are - nor nutrients. They really don't have a clue. Thyroid specialists are as rare as hen's teeth, so it's doubtful your GP would know who to send you to.
It doesn’t cause adrenal failure
It’s just that adrenals can’t compensate for the under treated thyroid
It’s important to get thyroid treated
You may need adrenal support (vitamin C or similar) while dose is increased
NHS doesn’t recognise adrenal exhaustion only Addison’s
See Dr Lam adrenal website lots of helpful info
If you have adrenal failure you should NOT take levothroxine until you are on an appropriate dose of hydrocortisone
Ok I will stop taking it till I see the doctor, thank you
Personally I think you should not stop the dose
Get full private testing while on this constant dose
Any test should only be done after 6-8 weeks on CONSTANT dose
You clearly need dose increase
Anxiety is very very common symptom of under medication
If you want full cortisol testing order saliva testing - 4 tests in a day
See Thyroid UK website for details of this and Thyroid and vitamin blood tests
Hi thank you, I saw the GP this morning, she said keep taking the 50mg dose, she said Kalicoat would be correct in some instances. GP knows my levels aren't right but she wants me to see an Endo and doesn't want to change my treatment till I have seen him as he will run his own tests. I got her to refer me to the one in my area that was on the Thyroid UK list in Taunton. I'm covered by private medical insurance so will make sure I get everything tested. She also took bloods again at 9.30 am. as last lot were done at 3.20pm.
Make sure to get vitamins tested and antibodies, as well as FT4 and FT3
Get full testing FIRST, before seeing endo, otherwise the consultation is wasted trip, as they need full tests first
What time of day was your cortisol taken? If it was around 9am then your cortisol levels are low. I'm assuming that as they have suggested a synacthen test then that suggests it was done around 9am. You will need to see an Endocrinologist to get the test done, you need to push to get your GP to refer you. A low result is suggestive of Addison's disease, this can be primary when it is the adrenals that are affected or secondary when it is the pituitary that is at fault. Have a look at the Addisons website for more information. addisons.org.uk
Jackie2402• in reply to
The tests were done at 3.20pm. I have private medical insurance thankfully so getting a referral shouldn't be a problem. I wondered if the pituitary could be at fault, years ago I had to have a hysterectomy at the age of 35 due to what in hindsight could have been hormone imbalance. Then I was diagnosed with underactive thyroid 4.5 years ago and now adrenal failure, so I was wondering if the pituitary could be at fault. I have looked at Addisons but I dont really fit the symptoms, ie I am gaining weight rapaidly, not losing it, but I appreciate thats just one of the factors. Thank you so much for your reply.
3.20 pm? And does it say on the results that that is a range for afternoon cortisol? Unfortunately, labs don't always understand the importance of testing cortisol at the right time of day. Cortisol should be high in the early morning, and it lowers throughout the day. So, you need to have the right range for the time of day, and that's not always what they give.
And, if your TSH was 6.68 at 3.20, it would have been a lot higher at 8 am. You really are very, very under-medicated for your thyroid. This all needs careful looking into. x
Hi GP took more blood tests today at 9.30am, yes I have been saying same to GP for years, my TSH hasn't been below 2 in the past 4.5 years, but apprently because this is within the range they dont care, regardless of all the symptoms. My last blood test 2 years ago was showing it was increasing as it went to 3. Anyway upshot of everyone's help is I finally got a referral to an Endo, so I feel a bit happier today.
Good.
Jackie your Potassium is high and is another sign of addison's so you need to get into a specialist soon to figure out what is going on.
Yes booked in to see an Endo but have to wait till the 26th
I haven't read your whole thread, but what I have read is shocking.
I just wanted to say that since you have so many things going wrong with your health due to your incompetent and sadistic GP, that you may find you aren't getting better as quickly as you would like.
I just wanted to say that you mustn't give up - but it could take you a year or two to reach your peak health after such long-term and severe neglect.
Since you have possible pituitary and cortisol issues as well, it is worth noting that low or high cortisol can make thyroid meds very hard to tolerate. I got stuck with too low a dose for ages, and it was only when I reduced my high cortisol that I was able to double my meds. The same problems arise for people with low cortisol as well. In some lucky people, getting nutrients and thyroid meds optimised (or as close to it as possible) makes cortisol levels improve without any extra treatment being required. Unless you have Addison's Disease though (which is an emergency and must be treated ASAP), I would suggest worrying about cortisol at some time in the future. Increasing levels of nutrients and thyroid meds will probably change your cortisol levels, so until it reaches its new equilibrium I would suggest not worrying about it.
Hi thank you, in all honesty had I not accidentally come on here I dont think I would ever have been any wiser, I just kept saying to myself that there was nothing they could do being it was fybromyalgia, so I carried on as best I could. I wont give up I felt such a reflief meeting this Endro, someone who is finally discarding the numbers to a certian extent and going on how I feel. The Endo said the same get the levels for the Thyroxin & Vit D right and other problems may resolve by themselves. He also told me its not a quick fix as he has to change things bit by bit till I am right again, although iits been so long i dont know what right is. My new GP has been a lot better but even then she didn't think to run the Vitamin tests, Slow Dragon advised me to get it done, thank god she did!!! Hopefully I am now going in the right direction now, I have looked at Addisons and I dont think I have those symptoms, I am like the majority hashimoto. I think my cortisol is low because of the lack of car I have recevied but time will tell, once the thyroxin take affect I am hoping my cortisol increases.
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