Hello everybody and I hope you are all safe after three months of lockdown in the UK.
This is my story and I am at my wits end. I don't know where to turn any more.... 😢
I was diagnosed with Hashimoto over 25 years ago. I am now 51. My endocrinologist has always been very good and when I have felt tired he has listened to me rather than my blood tests. About two months ago I staeted feeling tired and now I am just exhausted both mentally and physically. I can barely move, I can't concentrate as my mental fog is enormous, I have lost all will to do anything and sleeping doesn't help. I wake up exhausted. I have tremendous muscle and joints pain and I am also suffering from acid reflux and terrible sleeping nights.
My GP sent me to have blood tests covering a whole range of markers, including rheumatic ones. All the tests have returned as normal including Vitamin D, B12 and ferritin. However my cholesterol is up to 5.2 which has not happened in the last 9 years.
My TSH is 1.55 and my T4 is 17.8. I have been going through correspondence from my endocrinologist since 2010 and in some letters to my GP he recommends that my TSH should be around 0.5. There is an instance where he says... "she came to see me with exhaustion. Her TSH is 1 so I am lowering it etc...".
Two years ago my TSH was 0.23 and he was happy and so I was. So it looks to me that I feel a substantial difference when I am above a TSH of 0.5.
After being my endocrinologist for 25 years, I sent him an email and told him that I was happy to have an online consultation ((I have always been a private patient). He just sent me an email, dismissed that my TSH has anything to do with my symptoms and that's all.
I have asked him for a private consultation again, and let's see. I fin extraordinary that a doctor that has treated me for 25years,who has always kept my TSH low, who has years of medical records just dismisses me and doesn't give a damn.
What do you suggest I do? I am taking 150 microg Levothyroxine daily and rosuvastatin. I know that I must reduce my TSH... Or at least give me a chance and we shall see...bit I can't continue like this. I am so desperate that I am starting to have very dark thoughts which is unlike me, but I can't entertain a life like this for much longer.
Thanks for listening to me and for suggestions.
Octogold
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OCTOGOLD
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Fatigue can so often be the result of low nutrients - so do post the results of your tests for B12 - Folate - Ferritin - VitD
If levels are low in range then it is possible you are not converting the T4/Levo into the Active T3. You need more thorough testing to include T3.
Statins - even the NHS website mentions treating an underactive thyroid before taking a statin. Statins do not save lives and are known to cause other health issues. It is possibly low T3 that is the cause ... Have you read the book by Dr Malcolm Kendrick - The Great Cholesterol Con ? You can read his many informative Blogs on his website
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.
Please add actual results and ranges on vitamin D, folate, ferritin and B12
Low vitamin levels can result when under medicated
With Hashimoto’s we frequently need to supplement virtually continuously to maintain optimal Vitamin levels
What vitamin supplements are you currently taking
Absolutely essential to ALWAYS get Ft3, Ft4 and TSH tested together
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
You poor thing. I'm going through exactly the same thing as you, not only with symptoms, but with my doctor as well. I'm now seriously thinking of self medicating back to the dose of levothyroxine I was originally on and that I know is the correct dose for me. I hope you get it sorted.
I agree with everything everyone else has said. Your high cholesterol is suggesting that your FT3 is low. T3 is the active hormone, so if that is low it will cause symptoms. And cholesterol and T3 have an inverse connection. What's more you should not be taking a statin. Whilst the cholesterol won't kill you, the statin might! It's far more likely that the statin will cause a heart attack than the cholesterol - which, by the way, does not cause heart attacks or strokes. The body needs cholesterol.
The statin will lower your sex hormones, which will make you feel ghastly. Sex hormones are made of cholesterol.
Statins are not recommended for hypos, nor for women. Personally, I wouldn't recommend them for anyone. They can cause diabetes and cancer.
The fact that you have acid reflux also bears out the theory that your FT3 is low, and that you are not converting correctly. Hypos usually have low stomach acid, but the symptoms are the same as for high stomach acid. But, with low stomach acid you won't be digesting your food properly, nor absorbing nutrients correctly. So, low nutrients will also be adding to how bad you feel. What you need is something to raise stomach acid, so I hope your GP hasn't prescribed PPIs, which lower stomach acid.
As to the email from your endo, are you sure it was him that wrote it? It does sound strange. Does he have a partner, secretary or assistant that could have written it, someone that doesn't know very much about thyroid? Whilst it's true that the TSH itself doesn't cause symptoms or make you feel anything, it is an indication that your thyroid hormone levels have dropped, and that it is that that is making you feel bad.
So, your first step to getting back to good health should be to get private testing to see exactly what is going on. Whilst doctors will do whole rafts of useless tests that they totally ignore anyway to make it look like they're doing something, they will not do all the necessary tests for thyroid and nutrition - go figure!
So, you need:
TSH
FT4
FT3
TPO and Tg antibodies if you don't know if you have Hashi's
vit D
vit B12
folate
ferritin
Come back here with the results and ranges, and we'll be able to get a clearer picture of what's going on.
Youve had some good advice on here. I would just like to say that Im sorry you are feeling low and poorly. Like many of us - if not all of us - we suffer this ongoing burden from the disease its self, as well as the burden of inadequate treatment by many medical professionals. Which in my view leads to feelings of depression etc.
I reckon you’re probably just short of one thing maybe two things so blood test away... find the gap and fill it and you’ll probably go back to health. If you’ve been well for all these years, that means you respond to treatment and you will again, and be well again.
One last thing - given your age (Im of a similar age) has anyone tested for peri-menopause/menopause? FSH and testosterone probably need testing along with vit D. These can help highlight menopause problems that also have an effect on symptoms and may result in thyroid hormone changes. Just a thought.
Thank you SO much for all your comments and for taking the time to respond. Your replies really cheered me up. I did send another email to the consultant and I told him that I wanted to have a consultation (in no uncertain terms) and that I was not taking a no as an answer.
He gave me a time for Monday and I asked for a blood test form to be sent to me asap so that when I speak to him, we have some logical conversation. What is the point of having a consultation with someone that charges £300 if the blood tests that we have done by the GP are only covering half of the story? It makes me bloody furious, as I feel this guy only interest is money. I know doctors are not charities, but he is seriously taking the p.
So, I got the blood test form with all the necessary tests (vit d, foliate, ferritin, ft3, ft4, tsh and biochemistry). I think he should have also check for sexual hormones as I am seriously into menopausal times (but I cannot take HRT as I have breast cancer too.......hooray, anything else please?).
Anyway, I did run to Harley St to get the blood tests done this afternoon (I know it is better to have them done in the morning, but it was either that time or nothing).
Regarding statins: yes, cholesterol doesn't kill if the levels are not too bad. And yes, it is necessary to function, but it is also a killer when it blocks arteries, so it is not something to take lightly. I have been taken statins for the last 12 years or more. I don't like them, but they have kept my cholesterol under control (my hypo seriously makes me have high cholesterol as we have tried in the past not to use statins and I shoot up).
I will ask him to tell my doctor to put me back in Crestor. Generic Rosuvastatin doesn't seem to be good for me as it gives me more muscle pain than Crestor.
I will update you on Monday after I speak to him. He better be very bloody thorough in our conversation because I am going to be like the military police and he is going to see that I am really pissed off with him as he has pushed me into a dark place which is something I will not tolerate.
Rant over
Thank you all for your kind messages. Let's see what Monday brings.
As I promised, I had the consultation with the endocrinologist today. He was actually super nice, very friendly and we had a fantastic long chat.
Not only he was delightful, but he did pay full attention to my symptoms etc.
Now, I will be damned if I am not surprised by what happened...
On the 22nd of June my TSH is 1.55 and T4 17.9. (I didn't have the T3 tested as it was the GP ordering the tests). On my original post, I mentioned that if I am not around 0.5 on the TSH I do suffer extreme fatigue.
On Friday 3rd of July my TSH is 0.65 and T4 24.00
In parallel, and without knowing that my TSH was going down, since Friday/Saturday I have started feeling "human" again. Today is the first day that I have managed to work the whole day without fatigue and without mental fog. Then I find out about these results...
Ah, my cholesterol on the 22nd of June was 5.2 and on Friday 3rd of July was down to 4.6...my cholesterol has always been high when my TSH was high etc.
Why this sharp change in a few days? Well, Friday 3rd of July was my last day of taking a course of 7 days of antibiotics to treat H Pylori. It looks like by Friday I had killed the bacteria and my thyroxine has started to be correctly absorbed again.
My End said that there is a correlation and that h pylori can stop the absorption of Thyroxine. It looks like this is the case for me.
Regarding my acid reflux, he has told me to take omeprazol twice a day. I know it could be that my stomach acid is low but in the case of h pylori is usually high PH. I will see what happens after a few days and if it doesn't go away, I will revisit.
I wanted to post this to thank you all. I also wanted to post this so that people can be aware that h pylori/gastritis can really affect thyroxine absorption. And I also wanted to let you know that I was not crazy...in my case TSH is the perfect indicator.
I will update more if this serves to other people. This forum is extraordinarily helpful (I have given the link to a lady today who is struggling with diagnosis and she is trying to have babies).
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