Thyroidectomy 1992 due to cancer. Since then been on levothyroxine.
Since my last post here in Nov 2019 concerning hyperthyroidism and cardio issues my physical, emotional and mental health has deteriorated greatly. Honestly, I am losing the will to carry on which really scares me. I am drained mentally and physically...total lack of energy yet don,t get tired and unable to sleep. Can this be a thyroid issue?
My life has changed drastically since November 2019 due to a variety of health conditions being detected such as prediabetes, high cholesterol, high blood pressure plus I also having cardio investigations (awaiting a CT scan and echo test) via NHS. The reason I got to see a NHS cardiologist, sooner rather than later, was because I paid to see a private cardiologist and his letter to my GP prompted NHS cardio investigations. The private cardio doc even suggested to my GP that I be prescribed statins, selective beta blocker, aspirin, and blood pressure medication which i now take along with my usual 100mcg of levothyroxine.
Next appointment with NHS cardio doc is in three months time. During our session, he had access to info of my two previous visits to A+E whereby it was concluded my dose of levothyroxine was too high. Hence cardio doc did stipulate that the thyroid issue (hyperthyroidism) had to sorted out. He did do a thyroid blood test but have to wait till next appointment for the results.
Thyroid blood test done by GP October 2019 showed up abnormal but no one contacted me about this.
After seeing NHS cardio I had a private MRI scan on my head because of how weird (fuzzy) and empty it felt like a connection had been lost.... results of MRI are: Small vessel bleeds due to mini stroke leaving me with SVD....small vessel disease and the prospect of early dementia....yeah I scared my future does not look bright.
Not bright in the present neither so confused and overwhelmed by info I have read about hyperthyroidism and how it contributes to diabetes, high cholesterol and high blood pressure and even heart problems such as AF
I am being irrational, contemplating flushing levothyroxine down the loo. Present dose is 100mcg last endo blood test Oct 2019:
TSH 0.31 mU/L 0.30 - 6.00
Free T4 20.2 pmol/L 10.0 - 22.0
Free T3 4.2 pmol/L 3.6 - 64
Even though certain members have kindly commented on these blood results in the past and attempted to reassure me that I am not over medicated clearly something is not right. Gp thyroid blood test a day before endo blood test came back as abnormal but as mentioned above the surgery did not contact me.
As pointed out by members on this site my T3 is quite low. Question is could low T3 be so low due to prediabetes, high cholesterol and high blood pressure plus heart issue or am I grasping at straws here?
I could reduce my levothyroxine to 75mcg but if I did would my T3 go even lower?
Any feedback would be greatly appreciated. Looking for answers and solutions is the only thing keeping me going at the moment.
thank you all
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dragon51
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Am afraid due to Doctors relying on the TSH test only - patients are being incorrectly diagnosed as having 'abnormal' results. You are only Hyper when your FT3 is well over range.
Raised cholesterol does not need statin treatment - even the NHS website states the Thyroid should be correctly before prescribing statins. It is a Hypo symptom due to lowered metabolism/LOW T3.
Blood pressure meds are also contra-indicated with Levo I have read. I agree your symptoms/conditions could well be resolved with optimal thyroid treatment rather than a cocktail of drugs that could be causing more harm.
How are your levels of B12 - Folate - Ferritin - VitD ? If low they too could be contributing to your symptoms and well being. Hope you soon feel stronger ..💐
Hi Marz thank you for swift reply. I am totally opposed to taking medication before checking it out but heart symptoms was so debilitating, i was so ill felt I had to take them.....backed into a corner really. I do not intend to carry on taking the statins, beta blocker or blood pressure meds forever.
its the thyroid medication that is the key issue here but the other health problems have complicated things. I have had TSH suppressed for a very long time (since 1992) and suppressed TSH levels can lead to heart problems...... Next time I go to see endo I am going to tell him/her that i do not want my TSH supressed any longer. Also going to request T3 in addition to thyroxine.
I take B complex, Vit D and complex magnesium but no point getting blood check done until I get thyroid issue sorted.
Its a slow journey because everything is based waiting for NHS appointments.
thanks again going to contra-indications now.....!!!
Hi Wetsuiter thank you so much for taking the time to assist me in my dilemma. Really appreciate your help. I will try to clarify your questions one by one
1 Too much going on just now, on too many other medications that might effect the results of nutrient blood test. Plus T3 levels too low. Will nutrient blood test asap.
2 Have had blood tests done in the past with Blue Horizon and will use them again in the future after I get T4 reduced and T3 from GP
3 Yes you are correct low T3 is causing high cholesterol....I had it wrong.
4 You correct again Wetsuiter as are many others who replied to my initial post. I have certainly been educated today. Eureka!!!!
5 Not concerned about TSH changes due to change of dose....again I have been educated by you and other wonderful people on this site.
6 Knowing what I know now I welcome my TSH being suppressed when I take T3
7 Cardiologist looked at the A+E doctors conclusion/ diagnosis which explained why (symptoms) I was admitted to A+E. Diagnosis was over medication of thyroxine (hyperthyroidism) which led to severe heart palpitations.
8 Holding onto the thought Wetsuiter....Eureka!!! I now have hope in my heart?
9 I did not get any results of GP blood test. GP gave me a copy of recent blood tests to give to the private cardiologist as part of my medical history. Thats when I read that the thyroid test done in October was marked as "ABNORMAL CONTACT THE PATIENT"
10 I wont reduce my levo until I am given T3 by my GP
11 Heart problem started off with severe palpitations that woke me in the night. Heart was so fast I did not move for fear of it going even faster. Took over hour and half to slow down and felt really ill all over as if I had been battered. Took myself off to A+E. Happened twice. Was happening in milder forms so decided this needs investigating so went to see GP. He referred me for 24 hour ECG. The weeks went by heard nothing. While waiting for ECG monitor I got much worse. Felt like my heart was in a vice being squeezed, tightness in upper chest wall, breathlessness, pain down my left arm and neck. Could not walk at all...no energy whatsoever. Bedridden which is not like me. Felt so ill. Lasted for eight days. Took self prescribed aspirin. When feeling better and more functional arranged to see a private cardiologist. By the way I was still waiting for ECG appointment. Private cardio asked lots of questions and the conclusion he reached was that the palpitations and heart issues that lasted for eight days was two separate heart conditions that needed to be investigated. So eventually got to see a NHS cardio 7jan. Hence my concern about low T3 and heart problems. Hope this makes sense to you.
12 June 2019 Blue Horizon blood test. Doctors comments....said I was borderline hyper. 2 a+e docs said I was over medicated and hyper. Endo visit October re my palpitation symptoms said I could be hyper. Gp blood test....abnormal...whatever that means.
Personally I have that much going on with other health issues I would not know if I was hyper or hypo. Todate since bedridden heart issue mentioned above I have no energy whatso ever. Take dog out and come back home and just sit. Feel really low fatigued but never feel tired.....cannot get to sleep at all.
I have had TSH suppressed for a very long time (since 1992) and suppressed TSH levels can lead to heart problems...…
No they can't, that is a myth. Low FT3 levels can, though. Low FT3 levels also lead to high cholesterol, and many, many, many other problems. And, doctors seem totally unaware of this.
It is not levo the problem, so don't flush it down the loo, whatever you do! The problem is your inability to convert T4 to T3 - plus the inability of all your ignorant doctors to understand that. What you need is T3 added to a reduced dose of levo.
But, do be aware that adding in T3 will certainly not raise your TSH. If you are taking T3, it will suppress the TSH, but for a good reason: you do not need it.
TSH is a pituitary hormone. When the pituitary senses there is not enough thyroid hormone - T4 and T3 - in the blood, it increases it's output of TSH to stimulate the thyroid to make more hormone (Thyroid Stimulating Hormone). When it senses there is enough, it reduces its output. When it senses there's a decent level of T3, it reduces TSH to almost zero. Why? Because you don't need it. Why would the body waste energy on producing a hormone you don't need?
It might interest you to read this thread, and browse through all the links on it:
So grateful for such an informative reply Greygoose. You really have helped and inspired me to go to GP and basically demand T3 and reduction of levo. When all this started in November ( then got progressively worse with other health problems) I took endo blood result to GP and told him my main concern was low T3 due to poor conversion. Of course he took no notice of me and focused on TSH only.
Said he did not want to meddle with my thyroid meds and would leave it to the endo doc.
I am not going to wait for endo doc to sort meds out because appointment is 25 feb and I am not going to wait that long considering the information you have sent me.
Thing is I have no idea as to how long I have been functioning with low T3. No matter the lenght of time, I came crashing down with a bang in November up to present day and my heart has took the brunt of it all. Yes my thyroid levels can be put right but a damaged heart cannot....!
It was a funny heartbeat that took me to a GP in Crete back in 2005 . Hashimotos was diagnosed and my journey began. I changed over to T3 only a few years back and in the early days always felt when the next dose was due as my heart would flutter and feel strange.
I often mention an expensive book - available on Amazon - Thyroid and Heart Failure. It is packed with research papers from around the world demonstrating the endo/cardio links. It was the first time there was a coming together of Endos and Cardios for the purpose of research. Liothyronine (T3) is the star of the show. You can Look Inside the book on-line and review chapter content. Many of the papers are available on PubMed. Do ask if you need help. Also google - Hearts and Low T3 Syndrome PubMed ...
Ohh thank you Marz . Like everyone one else on this site you have provided me with such valuable information. I am so grateful to you all. Going to buy the book and get the research paper from PubMed that you mentioned.
As I said to greygoose in previous post: Thyroid levels can be sorted but a damaged heart cannot. But hey I have hope now more than had when I sent my first post .
What about your iron levels? We need decent serum ferritin levels (70+) to do a good job of converting T4 to T3. So your lower T3 levels could have something to do with that.
Also, when you say you take Vit B complex—is it a good one? Not just one that provides minimal amounts of the vitamins? And how much Vit D do you take?
In we hypo folk, vitamin and mineral levels have a nasty habit of tanking and making everything worse.
Hi Jazzw thank you for your most welcome imput. Yes I was recommended by a member on this site the best Vit B complex and the best Vit D to buy which I did. Will get full thyroid and vitanim blood test after I change levo dose and get T3 off GP.
I am so sorry to read that you have developed other health issues.
I can only " second " the explanations as already offered.
As previously detailed my thoughts go back to suggesting the introduction of a little T3 along with a small decrease in your Levothyroxine.
The TSH blood test is not a measure of anything, you haven't a thyroid, and you should be monitored on T3 and T4 blood tests.
Your bloods show that you do not convert T4 well and the obvious remedy is to drop a little T4- Levothyroxine and add a little T3 - T3 is said to be about 4 x more powerful than T4.
Many of your current symptoms may well reduce when optimally medicated on thyroid hormone replacement.
There is a list of " sympathetic endos " held at Thyroid uk if you email, I think it is Donna, maybe there is a specialist on there in your area :
Hi Pennyannie and thank you for your informative imput. Do believe you have posted me before. Anyway I did reduce my thyroxine to 75mcg and added 10mcg of T3. Problem was the T3 were out of date by three years and I could not monitor if there was any changes because I was so unwell with new health issues. So went back to taking 100mcg of levo and aborted the out of date T3.
Off to see GP asap to basically demand he reduces my levo and prescribes me T3. Also going to give him a copy of research paper Hearts and Low T3 Syndrone that Marz recommended I read.
The future looks bright thanks to you wonderful and supportive people.
Unfortunately dragon51, GPs are no longer allowed to initiate T3 treatment unless an endo has prescribed it for you first. Once you have T3 prescribed by an endo your GP can carry on prescribing.
Your results definitely do NOT show over medication
Low vitamin levels can reduce conversion of FT4 to FT3 so it's essential to regularly retest vitamin D, folate, ferritin and B12
Many people on just Levothyroxine need to supplement some or all of these virtually continuously to maintain optimal vitamin levels
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
is this how you do your tests?
If you took Levothyroxine nearer blood test this inevitably shows high FT4....it's a false high result
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
First step is to get ALL FOUR VITAMINS optimal .....before considering adding any T3
GP is not allowed to initiate prescription for T3
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3
Then get referral to recommended endocrinologist
Research shows 20% Patients with no thyroid can not regain full health on just Levothyroxine
In summary, patients on long-term T4 with either an increased serum TSH (>4 mU/liter) or a suppressed TSH (<0.03 mU/liter) have an increased risk of cardiovascular disease, dysrhythmias, and fractures when compared with patients with a TSH within the laboratory reference range. Patients with a low, but not suppressed, TSH (0.04–0.4 mU/liter) had no increased risk of these outcomes in this study.
Low FT3 does cause issues.....including high cholesterol
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
There is some concern that administering thyroxine in a dose which suppresses serum TSH may provoke significant cardiovascular problems, including abnormal ventricular diastolic relaxation, a reduced exercise capacity, an increase in mean basal heart rate, and atrial premature contractions.12 Apart from an increase in left ventricular mass index within the normal range, these observations have not been verified.13 Moreover, there is no evidence, despite the findings of the Framingham study, that a suppressed serum TSH concentration in a patient taking thyroxine in whom serum T3 is unequivocally normal is a risk factor for atrial fibrillation.
Mmmm. Statins are associated with higher rates of diabetes. All your thyroid bloods are in range so GP shouldn't be concerned. But as you say FT3 is too low and low FT3 is associated with heart problems - higher T3 correlates with a better outcome for heart patients. Might be time to add some T3. Reducing levo without adding T3 will reduce FT3.
In thyroid disease hypothyroidism causes high Cholestrol levels (LDL) and hyperthyroidism causes low Cholesterol levels.....My intern Endo told me this.
Hi Batty thank you for your reply. Myself and my family are baffled by my high cholesterol ... now I know what is contributing to it being so high can do something it about it . Stopped taking statins three days ago....main problem was I thought I was hyper not hypo. Now I know I hypo I am getting that sorted .
Excellent advice above, my two cents worth. Check your Selenium level. No conversion of T4 to T3 will take place unless selenium is present. If your Selenium is low get a supplement or eat two Brazil nuts per day (I do the latter). All the thyroid hormones (T4, T3 etc) are known as selenoenzymes because they require selenium to survive in the body. This is the quickest and easiest way to jump start the production of T3.
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The problem is your inability to convert T4 to T3 - plus the inability of all your ignorant doctors to understand that. What you need is T3 added to a reduced dose of levo. 
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