So, over eight years ago I was first found tohave Hashimotos. Since then my Gp has done the very basic tests every six months apart from when my TSH result has come back ‘borderline’ - typically 5.1, when she has retested me after three months and it has dropped to below 5 again. I have gained over three stone in three years despite exercising more and eating less. I have tried every diet under the sun. Only thing that makes a difference is the 5:2 diet but due to having reactive hypoglycaemia this is impossible to follow. My heart palpitations go nuts! I am permanently exhausted, my hair has thinned, I regularly get joint and muscle pain. GP says she can do nothing and doesn’t seem to care. I paid to see a sympathetic private consultant from the list and he would do nothing as regards my thyroid but it was he who diagnosed the reactive hypoglycaemia. The GP will not do any of the extra tests suggested here - B12, folate etc. I will pay to have that done and supplement accordingly. My TSH has never tested below 4.1 for the past 7 years. I am at my wits end to know what to do and realise I will have to treat myself to get anywhere. What would anyone advise please? I feel I have missed out so much on life in the past and want to start living again. Thank you!
At the end of my tether - any advice please? - Thyroid UK
At the end of my tether - any advice please?
rustysmum
GP says she can do nothing and doesn’t seem to care.
It's a shame your GP doesn't care but she is wrong when she says she can do nothing. In fact she is not following normal "guidelines" and she should be aiming to get your TSH much lower.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote in Pulse magazine (the magazine for doctors):
"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 article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Also see pathology.leedsth.nhs.uk/pa..., scroll down to Thyroxine Replacement Therapy in Primary Hypothyroidism and in the box you will see:
Replacement Therapy
TSH Level ..... Indicates
0.2 - 2.0 miu/L ..... Sufficient Replacement
> 2.0 miu/L ..... Likely under Replacement
It would be a good idea to get the full thyroid panel plus vitamins and minerals tested, and at the moment the cheapest way is to do the Medichecks Thyroid Check UltraVit
and use code MED99 to get a 20% discount before the end of October
medichecks.com/thyroid-func...
If you post all your results, including reference ranges, then members will comment.
As for the Hashi's, are you addressing this with a gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily to help reduce antibodies?
Hashi's information:
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
Thank you Seaside Susie that is very helpful indeed. I have been gluten free for several years now and take selenium daily. Is there any particular brand of Selenium you recommend. I have tried a few and find the Holland and Barrett absorbable makes me feel best, but have always had my doubts about their quality? I will definitely get the Medichecks test ordered - very useful information, and will post the results. My doctors surgery seem to be on a cost cutting exercise and the last three things I have been to them about they have refused to help! So even with written evidence I am not very hopeful of a better response next time but I will try. Thank you so much for taking the time to help so much. It is very much appreciated.
rustysmum
Apologies, for some reason I assumed you were already taking Levo, so my comment regarding your GP not following "guidelines" to aim to get your TSH lower is incorrect, that is for treated hypo patients. It would appear that your GP is waiting until your TSH reaches 10 which is what our sadistic guidelines state for diagnosis of hypothyroidism. So you should disregard the article by Dr Toft and the information from Leeds Pathology as it isn't relevant in your situation.
The information about Hashi's still stands though so you may find that helps.
I don't rate H&B own brand supplements at all, but I've just looked at the 200mcg dose one and it does contain the L-Selenomethionine form of selenium which is recommended. If they suit you then you could stick with those. I use a yeast bound selenium from Cytoplan which is a small, odourless tablet and is just as absorbable as the L-Selenomethionine form cytoplan.co.uk/selenium
Thanks. That is very helpful. Will take a look!
Has your GP not given you any thyroid hormone replacements at all? Does she think your TSH is not high enough for you to be prescribed?
If you have antibodies you should have been prescribed levothyroxine - no matter what your TSH is or was.
No, I have never been put on any medication. Until my TSH is consistently above 5 they say they cannot treat me. Have spoken to three different GPS at the surgery about this over the years. One, who is supposedly the endocrine specialist there told me that having tested positive for the Hashimotos antibodies was not important at all and I should take no notice of that.
I was diagnosed with Hashimotos back in 2005 and treated - even though all the Thyroid Function Tests were in range ! I live in Crete. My GP mentioned that treating with Levo was a way of supporting the thyroid whilst under attack from the anti-bodies - which were very high. Sounded sensible to me 
Sadly Docs have very little understanding of auto-immunity and of course being a chronic condition it will take up too much of their time and no drugs to prescribe either. It's all about lifestyle and self help it seems.
What are your vitamin D, folate, ferritin and B12 levels like?
Add results and ranges if you have them
Vitamin D is slightly low at 60 so have been taking Vit D and K2. I do not have other results yet but will be ordering the tests that SeasiseSue recommended above. Will post results when I have them.
No wonder most members on this forum self-source their own thyroid hormones as that seems to be the only way to improve our health. They are forced to do so by inept doctors.
Has your GP prescribed levothyroxine but doesn't increase dose to get your TSH below 5?
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/testin...
Definitely get a copy of Dr Toft's advice as advised by Seaside Susie.
Your palpitations can be due to you needing thyroid hormones. (I am not medically qualified and had undiagnosed hypo). I am fine now thankfully and hopefully you will soon feel better.
thyroiduk.org.uk/tuk/testin...
Thanks Shaws. No, my GP has never prescribed me any Levothyroxine. That is why I am feeling desperate. I hate these heart palpitations the most but they say I would on,y get those if I was hyper. Having read other posts on here I know that is not true. I do feel that I will probably have to find a way to self medicate but would rather not have to do that.
They are lying about palpitations. I had palpitations before being diagnosed and afterwards too. I had to call the ambulance often, even from work - on holiday - and I had no idea what was happening to me.
Tell your doctor your heart is struggling because you don't have sufficient T3 in your body. He/She is probably unaware of what T3 actually is - an Active Thyroid Hormone needed in all of our T3 receptor cells in order for our metabolism to function properly.
Ask for a Free T4 and Free T3 blood test to prove it's too low.
Make an appointment with another doctor or change your surgery and hopefully you will get a doctor who knows the very basic of how to treat hypo patients. The fact that the majority of doctors have know clue of our suffering when remaining undiagnosed or undertreated.
Our heart and brain need the most T3 otherwise both cannot function properly, nothing in our body can. That's why we have symptoms.
I would post a copy of the following to your GP from Dr Toft with a note saying that you have been advised that you should have a prescription for levothyroxine at 50mcg to start with. Along with a copy of Dr Toft's article
thyroiduk.org.uk/tuk/testin...
rcpe.ac.uk/sites/default/fi...
He is physician to the Queen when she's in Scotland. Surely to goodness your doctor will now prescribe 50mcg of levo and an increase of 25mcg every six weeks till your TSH is 1 or lower.
If your doctor wont accept Dr Toft's advice, you will have to source your own levothyroxine and many would feel nervous of doing so. Levo is also known as T4 and it converts to (or should do) to T3. Increases are every six weeks until we are relieved of symptoms or TSH is 1 or lower. Tell your GP that Dr Toft is the Queen's physician when she's in Scotland.
Give your doctor a copy of one of the interpretation on how patients should be diagnosed and tell him/her you are being neglected and need to be given a prescription.
Tell the GP also that by being unmedicated this could lead to you getting more serious problems (may not be true for everyone but she knows nil).
Yes YES AND YES over and over again . Most Dr's are NOT aware that the palpitations come from lack of T-3 . I was one of those patients that had TT and kept complaining to my Dr's about heart palpitations as a matter of fact it started prior to my TT because my thyroids where not producing enough T-3 that my heart needed . I even went to see a Cardiologist had a great work up and the Cardiologist missed that I was on T-4 Only but was on NO T-3 .
T-3 is EXTREMLY EXTREMLY VITAL FOR OUR HEARTS .
Thank you. I am doubtful I will get anywhere as she says she will not prescribe until I have two consecutive blood tests over 5. Mine always drops back just below on the second test!
Did you have all your tests, fasting and at the earliest possible time?
If not, insist that is when to have your blood tests and if you are finally given levothyroxine, allow a gap of 24 hours between last dose and test and take aftrwards.
I am feeling you pain! Same for me only I did not know that my TSH was high for the past 10 years. My GP did blood every year then told me everything is normal and I never asked to see the actual results. Told all is normal, while being on antidepressants, steroid cream for dry skin, taking time off work as I constantly felt exhausted, brain fog, no concentration ability and going to my GP crying in despair. One day in 2017 I ended up being seen by another GP who told me my TSH is over 10. When I asked to see all my blood results I was shocked to see that my TSH was elevated since 2009 starting at TSH 4+ and climbing steadily. They got me into Thyroxin but refused to refer me an endo. Desperate I ended seeing a private GP who told me I should have had full Thyroid screening + antibodies and check for vitamin deficiencies : D, B12 etc. Seeing an endo consultant privetly at the moment. He said the picture is much bigger that TSH only. See I how I get on.
With your TSH at 5 for 7 years, I am shocked you left so badly undermedicated. When my TSH hit my optimum 0.5-1 I felt reborn, a new person or shall I say my old self I had lost many moons ago. It took an year to get the dose right. Not sure why nonne is upping your dose? Your TSH is too high. I am also getting tested for adrenal fatigue and other antibodies.
Your GP will not do extra tests as they are not cheap and the NHS does not let them do it but when I said my private Vitamin D level test was scraping the barrel they sprung into action as apparently it really important to have tmy levels improved!??! Why did you not test me in the first place then? The stats show that huge number of thyroid patients have vitamin deficiencies, which are vital part of your hormone system...
Crazy! The primary care recommendations ( tell GPs what to do) only call for TSH testing and medicate only if you are TSH 10+ and have symptoms like I had !!!, all of them for 10 years that were medicated separately while my high TSH was ignored...
What did your private doctor test you for?
Hello Rustysmum, have you ever had your FT4 tested in 8 years or are the gp’s only going on the fluctuating TSH level?
Hi SOBS,
I had my T4 and T3 tested in June privately when I had menopause screening. Free T4 was15.4 (range 12 - 22) and Free T3 was 4.69 (range 3.1 - 6.8). At the time my TSH was 5.13 .
I've been Hypothyroid for many years and I have a blood test once a year in spring - My Doctor only tests TSH on NHS and can't do anymore ! All this year I've been doing private tests via Medichecks and had a Skype appointment with a Doctor Naturopath (must have spent easily £1000 so far on tests & prescriptions !). I've stopped taking Selenium 200-400mcg just in case as I've too much in my blood (not the real picture however as it might not be absorbed in the red cells but here in UK there's no test for Se in RBC). I've been taking it for a year with my Lugol's Iodine 15% liquid & Lugotabs . Good LUck to you and us all !
I'd put up a fresh post Valeriu to clarify if iodine should be taken when you are on levothyroxine.
I've heard it's OK Shaws....the Naturopath knows I'm on the Iodine protocol too....I'm taking NDT (porcine which has T3 & T4 in it) ..... Sorry , Have you heard otherwise? Thanks
Too much iodine can be just as harmful as a deficiency. I didn't know that either until joining this group
I'm only on the maintenance dose at 25mg of LugoTabs (from Hakala Labs) - As I understand one passes excess Iodine via the urine. Both my Se & Iodine levels are now high so I stopped Se....I was doing the DR Brownsteine's Iodine protocols with cofactors....However I didn't test either before starting the protocol....
Were your iodine levels tested before supplenenting ? Am only going by what I have read here.
I was following a few Iodine groups from US - they are into a lot of testing. One of the groups was Stephanie Buist / a Naturopath specialising in Iodine protocols; She said the Se test (here it's only done now in whole blood which doesn't show the correct picture) has to be in Red blood cells as that's what your body absorbs - in whole blood it's all that's floating around but doesn't mean it's been absorbed but she suggested I can stop Se for a year and test again....unfortunately here they just test in whole blood....
Hi rustysmum, I am really sorry that your GP is so utterly useless. These diagnosis guidelines are a disgrace, but as long as 'experts' who have no idea how to treat thyroid conditions are sitting on guideline committees, there is no hope!
There is a strong connection between an underactive thyroid and weight gain, as your metabolism is shutting down - no matter how much exercise you do, you will find it very difficult to lose weight. There is also a connection between increased lipids in the blood such as cholesterol and triglycerides, which will be elevated, if there is not sufficient thyroid hormone present to stimulate your metabolism. Glucose levels can also increase if not enough thyroxine is available (I know you have reactive hypoglycemia, but if you are not having enough hormone for your metabolism, over a period of time this can actually lead to increased blood sugar levels).
Palpitations and anxiety are also connected to receiving too little thyroxine - I had my dose reduced earlier in the year and experienced these symptoms - but I put myself back on the higher dose again and feel fine!
In your case, I think you should be given a trial of thyroxine to see, if that would improve your symptoms. If you are under-medicated for a long time, this can also lead to long term damage, so I think you should try to get someone to listen to you and insist on treatment.
Could you maybe change GPs and see if another GP is more sympathetic to your symptoms?
All the best and good luck!
Thanks Tina Maria. I have spoken to three different GPs now at our practice and all refused, so think I may have to change practice. However it seems such a common issue that I am not sure that will help either. Thank you for your clear explanation. It is reassuring that hopefully all my issues will improve if I can persuade someone to prescribe for me!
The NICE guidelines state that those with TSH between 4-10, but who have symptoms can be treated with t4. Google NICE guidelines sub clinical hypothyroidism. Or see if this link works...
cks.nice.org.uk/hypothyroid...
Thank you Laundretta. This is really useful and interesting! I didn’t realise that they should give a trial if TSH is between 4-10. I will copy the link and take it to my next appointment. Many thanks!
Yes if you have symptoms. And especially if you also have antibodies as you must do if you’ve been told you have hashis. I was in a similar position, (Although I hadn’t yet had the antibody test) I went in with the nice guidelines and basically said I wasn’t leaving until I had a script! My TSH was 6.4 and t4 in range but lower ⅓ of the range. However I had had the first TSH test only 4 weeks previously. It came back 4.1 - just in range, but I played up and ‘requested’ a re-test after I came on here and saw that TSH should be tested in the morning. GP wanted to wait and retest in 6 months in case the 6.4 was a blip. Er, I don’t think so! We went round and round in circles with me re-stating my symptoms over and again and him becoming increasingly assertive that I have ‘an anxiety disorder’ and after about 25 mins I’m sure he gave me the script just to be rid of me, saying ‘Well go on then try the levo, most people feel better on it’ (??! Makes me wonder how many cases of anxiety and depression he has diagnosed and magically treated with levo? You’d think the lightbulb would flash eventually!) So hang in there and firmly state your case, it might just work.
Sorry that turned into a bit of a rant! They love me at the Doctors.....
Lol! It is so very frustrating. They do drive us to it! I think my doctors feel the same about me! Good for you being so persistent. Shame we have to be like this before they pay any attention.
Thanks again!
At the end of my tether
At the end of my tether...
Supressed TSH and end of tether
At the end of my tether
