I'm so glad to have found this site. I've been reading and learning from here since about March when I had a parathyroidectomy and hemi thyroidectomy due tumours (benign) on both.
I've only just plucked up courage (if that's the correct term!) to write a post. I have been so unwell, for so long, that I can hardly remember when it started. Tired, headachy, muscle aches and pains, depression, sore throat, dry hair and brittle nails, tinnitus, - need I go on? I was diagnosed with chronic fatigue syndrome about 12 years ago. When I looked online I did, indeed have all the symptoms - but since there was no good reason given for the onset of the condition - I was unhappy with the diagnosis. There MUST be a reason for these symptoms. I was prescribed Omeprazole for GERDS for several years until stopped taking it because I felt that not only was it not helping me, but when I took a tablet it caused me pain.
Eventually, when I went for a brain scan for the pains in my head and tinnitus, the neurologist suggested that I had my parathyroid checked because of the calcium levels in my blood. When I checked online the symptoms of excess calcium I ticked all but a couple of the twenty odd symptoms.
I felt amazingly well for a few days after my op, but after a few weeks I started to go downhill fast. When I saw my endocrinologist at the six week review he told me that I needed thyroxine because my thyroid was struggling. My TSH at the time was 3.5. He told me that my GP was unlikely to prescribe it because I was "in range", but it was clear that I needed it. I started on 50mcg.
My TSH improved initially to 2.5, but then I went back to my GP because I felt dreadful. Another test showed my TSH at 3.8 but he wouldn't increase my thyroxine because I was "in range".
He referred me back to the endo ( a different one) who told me that they only test and treat TSH levels!
I can honestly say that I do feel, in many ways, better than I felt before the op. In fact there were some symptoms that I, or the doctor, had never made a connection with my parathyroid or thyroid, that have disappeared.
However, I now feel that I have replaced one set of problems with another set of problems. I am still tired, but not as bad as I was. I still have brain fog, though not head pain as I had before. I don't have tinnitus any longer.
What I have now is joint pain. Lower back, wrists ( I've had surgery on both wrists for carpel tunnel within the past eight years), heels, shoulder, knees. When I say heels, I mean heels - not ankles.
Now I don't know if the symptoms are due to hypo or reaction to the Levo, (Mercury Pharma).
I haven't got my blood results to handy post at the moment but I know my Vit D is 72, my B12 is high ( I supplement these).
I've bought some Thyroid S but haven't started taking it yet because I'm waiting for another blood test for steroids, or something, I think.
I'd appreciate some thoughts on this.
I eat well and healthily. I take my Levo early in the morning with plenty of water. I wait until lunchtime for my supplements and don't take my HRT until teatime.
Everything in my head balks at taking synthetic T4, favouring a more holistic approach. I've got the Thyroid S from Thailand but am not sure a) how to take it, or b) if I even should.
Help!
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looselywoven
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I was on Levo for years after a total hysterectomy and HRT..... I always felt achy after that and easily fatigued... I just always thought that was just the way I was...I always had to diet ..... Basically starve almost to keep my weight where I wanted it and I developed hypoglycaemia .... Obviously from being hypothyroid .... But I didn't know that then........ Anyways for the last year I have been on t3 Erfa and now my endo has me trying straight t3 Cytomel... He says people with hypothyroid do not need t4 which is what Levothyroxine is..... So I hope this helps some and all the best to you in finding good health and happiness🎄
When the blood tests and levothyroxine were first introduced as the 'perfect' test/diagnosis, I think they forgot they were dealing with flesh and blood patients and not robots because the medical profession are unaware and don't take notice of our clinical symptoms. Before these tests, which have made a fortune for pharma companies, we were given a trial of NDT (which was used since 1892) and if the patient improved they continued. Doctors used to be taught as medical students how to diagnose and most could as soon as the patient walked into the surgery.
Although you've been diagnosed with a lot of other 'Diseases' they were all hypothyroid symptoms: i.e
This is one doctor who was a one-man crusader to try to get the Endocrinology in the UK to see sense and stop all the nonsense with regard to diagnosing/medicating. Blood can give an idea but they don't do FT3 and the TSH is useless for many. Unfortunately for us he died of a stroke and everyone else is scared of the consequences for their livelihood and we cannot condemn them but it is the patients who are condemned to a life of multiple diagnoses and ill-health and usually have no recourse - Dr Skinner was certainly not as a Virologist he was sent or people privately saw him
We need a TSH 1 or lower and some need it suppressed. As Dr Lowe above (died two years ago) said why do patients' who've had thyroid cancer be given suppressed doses of thyroid hormones and they don't drop dead and are apparently well, but others are restricted to insufficient doses and ill.
If you are on 100mcg of levo you can switch straight over to 1 grain of NDT and I'll give a link:
"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
Shame you didnt see the first endo again he sounded unusually helpful. I would try the thyroid s but it might take a while for you to get better. I had to try several NDTs before I found one to suit me. You have been ill for a long time and it is probably going to take a while before you are 100% again. It may turn out you need some adrenal support and have you had your ferritin and folate tested as these need to be good for you to absorb the hormones.
You look very beautiful in your photo.I hope you feel better soon and keep posting as people on this forum can support you untill you are better.
Yes, I agree. I don't know how it came about that I didn't get referred back to him - I remember the GP asking me if I wanted to see him again and I said yes.
If it was me I would start by adding half a grain of Thyroid-S to your Levothyroxine. You need an increased dose, and this would give you a chance to see how you react to the NDT. After 2 weeks if all is well, you could drop the levothyroxine and go up to 1 grain of Thyroid-S. Then increase another half grain every 2 weeks until your symptoms are resolved, but if you start to get fast pulse, headaches, too hot, loose bowels, anxiety....then take a bit less.
I think a 60mg pill of Thyroid-S is one grain.
I'm not an expert on NDT but from what I've read on this forum this is the kind of approach people take.
Hi there, reading your post sounded just like me writing about my own problems!! I had a parathyroid gland removed due to high calcium and a semi thyroidectomy. When they operated they found the lobe of the thyroid had spread due to nodules and the parathyroid gland was contained in that. I have most, if not all of your symptoms and feel generally like rubbish all the time, with periods of even worse rubbish. I have Hashimoto's and am on MercuryPharma too as I found when just had what the pharmacy was stocking at the time and which was different every time made me feel even more up and down than I am now. I would be interested in your comments with regard to the new medication ThyroidS as my life is very constrained because of my symptoms and I seem to have lost most of my friends to boot! I also have fibromyalgia and also Sjogren's syndrome and a host of other conditions. Good luck!
I can't tell you how grateful I am to you all for taking the time to respond like this. It's so helpful. I kind of knew, when I wrote the post, that I wouldn't be able to resist starting the Thyroid S once I had received it! I've taken one on each of three days. No noticeable change, good or bad. At least I now know that it is not going to cause a bad reaction. What I really didn't want to do is to change and find that I have a dip before an improvement - especially with Christmas just around the corner. I'll drop the Levo and build up the TS gradually.
Some of my recent bloods were:-
TSH 2.5 mU/L 0.30 - 6.00
Free T4 13.5 pmol/L 10.4 - 24.5
Folate 13.2 ug/L 3.0 - 20.0
Cortisol 193 nmol/L 150 - 650
Calcium 2.44 mmol/L 2.20 - 2.60
Magnesium 0.91 mmol/L 0.70 - 1.00 ( I take supplements for this)
I don't know what these should all be (except TSH).
Thank you for the links that you put on, shaws. Who knew that so many things could be linked to thyroid. I'm feeling optimistic for the first time in an awful long time.
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