I had total thyroidectomy 1996 which resulted loosing my parathyroids during the operation resulting into my present condition as a Hypothyroidism/ Hypoparathroidism. Well, I had very experience in the beginning before I was diagnosed properly but for the last 18 years have been doing well as my thyroxine levels were managed on 125 MCG. I started on 100mcg and later in years, was increased to 125mcg. I have been well for more than 8 years on the same dosage. Just two weeks ago, my GP advised that I drop the 25mg after the blood test showing being on high dosage. I was perfect until the whole of last started feeling weird...palpitations, profuse sweating, loss of energy and a fainting plus dizziness episodes. Booked to see my GP but as we discussed, he refuted that my condition is not caused by reduction of my dosage from 125mcg to 100mcg. And, after seeing me, he did not give any help to stop the above symptoms. Its awful the way I have been feeling. So today, I took back my 25mcg to see how I would feel. Amazingly, didn't have palpitations and not dizzy or the fainting feeling.
However, I would like to hear from.as an expert in this area and, give a an advise. I don't know what my GP is after because I am waiting for a letter to make an appointment for a heart scan!! Is it necessary ?? My pulse, BP were all normal. Also was for a blood test to check my haemoglobin levels of which,vi will do on Monday.
Waiting to hear from you.
Harriet.
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Busingye
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Hi Harriet, everyone's thyroid produces a certain amount of thyroid hormone containing T4,T3, T2,T1 and calcitonin according to what their pituitary demands. Without your thyroid, the amount of hormone has to be calculated but you were only given T4. It's very rare after 18 years to need less hormone. Your doctor should explain why he did that causing you to become symptomatic again.
I've read a lot of about Hashimoto's and they state if your treatment doesn't keep your levels high enough you can have some heart issues. But they believe the levels need not be that high. One was that there would be a lag in the r wave on an ECG. Another deviation is an enlarged left ventricle. If they find anything regarding your heart I wonder if they will rather say you had been over medicated when in reality you may not have received adequate treatment.
I'm no expert but just know it can happen and I think the T4 treatment may be one of the reasons.
Thanks Heloise fir a quick reply. Well on addition to my treatment, i take Vit. D (Alfacalcidol) and Calcium carbonate...D3. However, i have not heard of Hashimoto, this is new. And you saud was on T4...makes it more complicated. Let read aboou Hashimoto but I am still in dilemma.
Harriet, you didn't say why you had your thyroid removed. Was it due to cancer? Then perhaps you didn't have Graves or Hashimoto's. These are autoimmune diseases so you may ignore the comments about them if you were not diagnosed with either.
Yes, Levothyroxine is synthetic T4. Decades ago people were treated with a more natural type called natural desiccated hormone containing the same ingredients as our own. T4 may not be adequate for everyone and if you can supply yourself with the 25 mcgs. you are missing, I would ignore your doctor. If you can find out why he did and let us see if his reasoning was justified, that would help.
Hi it sounds to me that it's most likely that at 100mcg of levo you are under medicated as you were feeling fine on the 125mcg. But hard to tell without your bloodtest results, if you have them post so we can give our advice we need the figures as well as the ranges thats the figures in brackets after the results. You need t4/t3 in top quarter/third and tsh to be 1.0 or below this is where most of us feel well.why gp's always want to find other reasons for your ill health besides the thyroid always amazes me when it quite apparent that's it's thyroid. I'm not an expert just a fellow sufferer, had graves desease which cause hyperthyroidism had RAI so became hypothyroid now on levo.i f your having problems with gp and getting him to increase dose email Louise Roberts at Louise.roberts@thyroiduk.org.uk and ask for pulse magazine article by dr toft which basically state's what I've said about where your levels should be to feel well it's question 6 in the article, dr toft is a leading endocrinologist and past president of British thyroid association so hopefully your gp will accept this advice. I got an increase in my meds when I showed my gp this article so hopefully it will work for you, if not maybe see a different gp.
Thanks Raventhorpe for that information. I really don't understand why my GP didn't get me on anything to relieve me of the symptoms though didnt agree with me, that the were withdraw symptoms. As a patient its awful how we feel even though the doctor knows but its not him having that horrible feeling. However, while am awaiting the heart Scan and blood test for my HB levels, I have put myself back on 125mcg..I feel much better. Cannot wait to collapse and die when have the meds with me. Its a shame I don't have my results of my last blood test but will ask the doctor to give them to me.
Hello Raventhorpe, its a bit confusing. I had two blood tests done on the 25th June 17 and another on 4th July 17. Both give different results i e on 25th Serum TSH level 0.16 (0.3-5.5) below reference limit and on 4th July 17: TSH level 1.2mu/L (0.3-5.5) And all this was before my dose was reduced. Last year 5th Feb 2016...T4 level..21pmo/L (10.0- 22.0) and TSH level was 0.05mu/L(0.3-5.5) below reference limit. So that means my TSH level has been low? Yet been on 125mcg. I really don't get it here!! Could you be having Dr. Tift's email so that can send these results. During our interaction with the doctor this morning, he said cannot do another request for the thyroid until after 8weeks to make sure my levels settle?! However, do you think I needed an increase of dose or decrease in such circumstance? But putting myself back on the 25mg has lessened my Palpitations. Am confused.
Hi busingye gp's are tsh obsessed unfortunately and that seems to be that is what your gp is baseing your medication levels on. As your t4 in 2016 was in range and you were feeling well then you were not over medicated even though tsh is low.so the more levo you take the more your tsh will reduce but if your t4/t3 is in range then you are not over medicated, gp's don't seem to get this they are only interested in where the tsh is. As for the two bloodtest results you had ten days apart where they done at the same time of day did you fast for 12hours before and not take your t4 for 24hour before test, I'm asking this as these things can affect the level of your tsh so that could be why they are different. Tsh is highest early hours of the morning and goes up throughout the day and when you eat, so on the forum the advice is have the bloodtest done at earliest time possible before 9am if possible and don't take Levo till after bloodtest and fast for 12hours before bloodtest, gp's will not necessarily agree with this but most of us on here know this is the case from past experience.by the way my tsh is 0.01 (0.27 -4. 20) so suppressed but my t4 is 21.4 (11 - 22.00) and my gp's happy to leave it there as long as my t4 is in range and that's down to,showing her the pulse magazine article I mentioned in my last post, did you print it off and show your gp like I suggested?. I'm not personally in touch with dr toft he practices in Edinburgh I believe,and he's private so would think he would be expensive to consult.you can buy a book he's written called understanding thyroid disorders which might help you understand the workings of the thyroid you can buy it in W.H.Smith or on Amazon. Obviously I'm not medically qualified this is just what have learnt from this forum and looking on the net and being hyperthyroid then hypothyroid for many years you need to read and learn as much as you can about this desease as I've found you can not rely on doctors.
I think your GP is hiding behind the heart issue. What they fail to realise, that what dose suits one person, may not suit another. I was told, "If the dose is too high, it can cause heart problems BUT if too low, they rather you have the higher dose anyway, which to me is a contradiction. The fact you are having palpitations on the lower dose and feeling unwell, may indicate that your dose is too low.
Do you know what your ranges are? I have found out that they read from a script, and some times "Normal" no need to act, may mean that you are on the low part of the range, if that makes sense. At the end of the day, we all want quality of life.
From a personal note Busingye, I was born with only a partial non working gland, so have been on T4 all my life. My current dose which was my original dose is 200 mcg of thyroxine, but one GP dropped me to 75 mcg and it started a whole rake of problems, some of which have damaged by health forever, but each time they scan my heart, I have no problems. I also take 20 mcg Lithyronine, which is what the NHS are trying to stop because of the price.
They hide behind how bad it is for you but it isn't unless in high doses like any medication. I would ask for your ranges, it does keep the GP on their toes and also gives you ammunition, also enables you to compare each result. I would also ask to be referred to see a Specialist, which is your right to do so. Perhaps let us see what your ranges are, some one here may be able to explain them to you.
Hope all goes well with the heart scan and take care, let us know how you get on.
Helloh there my friends... Sharing about my blood tests... I have some new from blood tests which have shown that, I am diabetic!! Well, I attended the diabetic clinic to learn more about diabetes. I understand having hpothyroidism or rather thyroid problems can activate or be connected to diabetes. I am taking diabetes meds now, awaiting for the Echocardiogram next month!!! My doctor has referred me to see an Endocrinologist so just been given an appointment for October!!!! Will have to wait until then my medication not sorted out. As I told you, I had to get myself back on 125mcg. Palpitations are not anymore. I don't know..many things are happening as my memory seem to be going bad too.
Thanks JollyDolly for the response. Will book the heart Scan and do the blood test for anaemia then take it from there. I have put myself back to my former dose of 125mcg....incidentally feeling much better. My doctor didn't give me any relief of my symptoms which was making me feeling horrible.
Sorry to hear about the diabetes but if it can be reversed. I am assuming it is type 2?? If type 1 then I know it can't be. Just thought I better confirm that.
Three years ago, I was rushed into hospital with severe pneumonia and an enlarged heart, after two weeks in HD I was told I might need heart surgery - Anyway getting to the point, whilst I was in hospital they reduced my thyroid medication again to 125 mcg T4 and 20 mcg T3. As a result, when I came out, I was just in the diabetic range. So for a few months I was put on metformin, not that I took it regularly.
I am now not considered to be diabetic, HbA1c levels at the time were 49 and within 3 months had gone down to 37 and now 20 something, Which normal. They also did the 3 hour glucose test of drink a bottle of lucozade and again normal reading. So try not to be alarmed - the diabetes may reverse it self - I just control my results by diet.
Regarding the heart scan, it is sometimes to cover their arses! I have had three, each time normal. The last one was when I was in hospital, my then Consultant was giving me a lot of crap about this and that, none of my doing. (I am overweight because of the problems I have had, but now losing because I am now on my natural dose) and that I might need a operation if the pneumonia had cause a leaky heart and again she like so many other professionals was proved wrong.
At the end of the day Harriet, you know how you feel, you want to feel well and have quality of life and that is what the NHS and other professionals failed to realise, we are all different, one pill does not suit all.
All the best for your scan, I bet you will prove them wrong and please feel free to message you whenever you want.
Why they don't listen to how we feel is completely beyond me. Just looking at TSH is like going back to the dark ages, although we would probably have got better treatment then!
You have had good advice so I won't reiterate.
You may as well have the heart scan if they are offering one.
I'll see if I can find some research that states being undermedicated Causes palpitations, this you can then show your GP. Maybe someone from admin has some or Louise Warvill
louise.warvill@thyroiduk.org.uk
I have a stash of Levo that you are welcome to as I now self medicate with NDT as Levo doesn't work for me. If you PM me your address I'll pop it in the post.
Hi Jolly dolly, well I have a history of diabetes type 2 twenty years, but because its a long time, I had forgotten about it. Only to recall when this happened again. I was treated with same tablet and then it disappeared after sometime. I can't understand what really happens to get the sugar in blood and, hopefully I get over it again. My diet has been consistent so am trying to change the food I am eating. Its such frustrating because you don't know what to do. I do exercise everyday unless otherwise.
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