I'm hoping for further advice and guidance please.
I have been deteriorating rapidly for almost a year now! Barely functioning on a daily basis.
I've been on 50mcg of Levo for just over a year and a half. All seemed fine for 6 months and I had no major symptoms or side effects from the meds.
After getting an ear infection and having a course of antibiotics in August last year, I have struggled immensely. I am not sure if the antibiotics and Levo interaction caused a severe reaction but my thyroid symptoms are now off the scale.
Severe cold intolerances; constantly shivering, chills, headaches, freezing hands and feet and extremely painful cold nose which feels blocked and stuffy all the time.
My nail beds have turned a purplish colour. Blocked ears and what feels like sticky mucous when I swallow. Throat feels tight and dry and makes spasm noises. Pins and needles, dry hair, very dry scalp/skin and acne has appeared all over my neck and cheeks which was not previously there. I also have bad muscle aches, cramps and pains in my legs, back and neck.
I now have TMJ from grinding and clenching my teeth due to the pain. I also now suffer from depression and anxiety and find everything an effort, even talking to my family which is one of the worse aspects of the whole thing for me, Alongside the severe nose and head pain and pressure.
I went to my GP and had bloods done;
Nov 17
T4 - 21.5 pmol/L (10.50 - 24.50pmol/L)
TSH - 0.43mU/L (0.27 - 4.20mu/L)
(They don't test T3!)
Feb 2018
T4 17.6 pmol/L (10.50 - 24.50pmol/L)
TSH 1.56 mU/L (0.27 - 4.20mU/L)
TPO 36 (0.00 - 50.00 kU/L)
(Again no T3 Test)
March 2018, I had a number of blood tests for Vit D, B12, Folate, potassium etc and Vit D came back low so I was put on a course of high dose Vit D tablets. (Still no change to my condition however.)
Despite how horrid I feel, my GP has said that my latest results are in normal range and so she will not increase the 50mcg dosage that I have been taking for a year and a half. She said that 50mcg is the perfect dosage for me which I have continually disputed based on how I have been feeling. She said that if she increases my dose based on a 'normal result' her license will be removed. She also said that if I go to an Endo and they recommend and increase she still will not approve it. I asked for a change from Levo and she said there is nothing else!
I am due to get another blood test this week, and I am trying to remain positive that things will change for the better for me soon but it feels like this GP has my health in the palm of her hands, whilst I suffer terribly. I have been to the surgery over 15 times in a year seeking help! Before I was diagnosed I went maybe twice or three times a year for the odd ailment.
If anyone has any advice as to where I can turn next, I would really appreciate it. Everyday is a massive battle at the moment and I am only happy when I am asleep.
Written by
gnlmd_82
To view profiles and participate in discussions please or .
“Her licence will be removed?” Goodness, how melodramatic! I really don’t think that would happen for raising a dose of levo from 50mcg to 75mcg.
We generally say here that most patients feel best on levo when they have TSH of 1.0 or below. Yours is well over 1.0, so plenty of wriggle room there.
Is there another doctor in the practice you could see?
She also said that if I go to an Endo and they recommend an increase she still will not approve it
So she's happy to go against the advice of an endocrine specialist and keep you ill. I think you would be better off finding another doctor, you really, really, don't need this one.
It’s really worth trying a different GP, they definitely vary a lot in their attitude. My old GP was great, constantly reviewing and kept my tsh around 1, had a real battle with the latest one (moved house) but got there in the end.
As you had a course of antibiotics for an infection, have you considered that it might have upset your gut flora and wiped out the good bacteria? As your vitamin D was very low, your calcium levels will have also been impacted. Ensure you eat calcium rich foods at every meal to help ensure sufficiency. You could try a good probiotic.
Along with vitamin D3 are you taking its co-factors magnesium and K2-MK7? You might also benefit from a daily dose of vitamin C, you can buy it as a food form of the supplement, vitamin C that comes from plants is kinder to your body in my opinion. It's the only vitamin you can take at the same time as your levothyroxine.
I had a range of symptoms after a few courses of antibiotics for infections. I took a good range of vitamins, improved nutrition, went gluten free, started eating fermented food and slowly got better. It took about 6 months to gain a real improvement, it's not an instant fix but definitely worth it. Your GP sounds entirely unhelpful, why hasn't she made useful suggestions to improve your health and monitor progess?
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Very often vitamin levels are far too low (due to far too low dose of Levothyroxine)
Then TSH often is low
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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. When on Levothyroxine, don't take 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 especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
NHS guidelines saying standard starter dose is 50mcgs. Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
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
Come back with new post once you have full private blood test results and ranges
You may need to find a new GP as your current one appears to have closed her mind to patients views
Thank you all so much for your comments and helpful suggestions.
I have already seen a number of GPs in the practice for this and see is the best of a bad bunch if you can believe it. She was the GP who started me on Levo and I trusted her initially as she informed me that she also had an underactive thyroid and took Levo for years. She keeps saying I would like to help you but I do not know what is wrong or what else to do. This has all really impacted my quality of life.
I just really don't understand why I can not trial 75mcg. Anyway, I will get private bloods completed as suggested and see a Private Endo.
I have taken a number of probiotics courses to put back my good bacteria but will buy some more and see if this helps.
So she would know better than an endo? I'd find another GP as that one is an arrogant idiot who is not interested in making you well. However, your results look OK, so I'd get private tests done to see what your free T3 is doing (needs to be done at same time as Free T4 and TSH. Of course, if your results were not done in the morning, fasting, 24 hours after last dose, they won't really reflect your usual levels. When you've got new test results, you can decide what to do.
Hi, gnlmd_82
It seems that any infection really upsets the thyroid if you are already low. At least it seemed to with me.
Hope you get sorted soon xxx
As for not having the energy to talk, I was chatting with a neighbour not long before eventually being put on Levo, and suddenly felt my eyelids starting to swell and concentration disappearing. I managed to tell her that I would have to go because of how I was feeling but finding the right words and actually saying them was a major effort. At least she already knew I had thyroid trouble and understood!)
I don't know much about adrenal symptoms, but have you had that tested as well?
Does UK have get your own blood test places. In the states I use LEF.org / lifeextension.com do you have a UK equivelent? IE get your own blood tests, don't wait or complain the Dr won't order what you need.
See my comments, curt504a on this thread. re: T4 not converting to T3 in some women per my Endo Dr and support groups here in the US. Odd that the UK Thyro group does not mention Armor or even consider that these reports of not being energetic maybe low / no T4-->T3 conversion?? rT3 high? etc.
I think what I would do in your situation is to raise your dose to 75 mcg yourself and see how you feel. Do it in two steps over a month. You do, however, need your FT3 measured (at the same time as FT4), because you may not be converting (from T4 to T3), and you need the ratio, it should be about 1:4. Lack of or low T3 can cause a whole spectrum of problems, Low T3 may have caused your initial infection which necessitated the antibiotic - low T3 can inhibit your immune system - and hence your infection in the first place. Keep an eye on your pulse and blood pressure when you increase your dose, if either starts to rise too high drop back to the previous dose. While 75 might be too high, it seems that 50 is too low, aim for the middle if 75 proves to be too high - do this via alternating the days for your 75 and 50 (your dose will then be ~63mcg).
I feel for you and this Dr is not interested in making you well, her ego is too big. She won't change. As you feel so poorly and mention having an ear infection and being on antibiotics, it won't have done your gut any favours which will affect nutrients that help your thyroid. I was kept on 50 mg Levo for a year, T3 never checked. At the end of that year, my TSH alone was 5.5 and the dr still believed I was in range and so was well. I was bed bound and had repeated water infection, ear infections and chest infections, almost constantly on antibiotics but was told my thyroid was fine. They lied and did not know what they were doing. By the time I finally got help, my adrenals were so exhausted and were almost flatlining, DHEA levels well under range, ostrogen dominant, had intestinal parasites and H. Pylori and Candida.
Please don't let them do this to you. Switch Dr and find another who is interested in helping you. I have never heard of anyone being optimum on a pathetic 50mg Levo, you need an increase in dose and like previous people have said, more detailed thyroid tests. Good luck.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Refused dose increase today
Recent results - dr refusing to increase levo
Results back, GP says 'normal' and no increased Levo needed, gutted... 
Advice on Blood Tests + Levo dose
