Need some advice please : I had my thyroid... - Thyroid UK

Thyroid UK
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Need some advice please

cbraffe
cbraffe

I had my thyroid removed on 8/07 this year. I was well to start with for the first few months apart from the healing of the scar. I am on 125mg of levothyroxine. For the past 3 weeks , I feel so tired, have loose stools, pain in chest and joints, I am very breathless. My blood pressure has been high to and I feel feverish too. I have been to the doctors twice and A&E but have not had any explanation why this is happening. I feel as if I am getting all the hyper symptoms. I had and ECG that my doctor was not happy with the results and suggested I see a cardiologist. I am so fed up and I believe it is my medication that needs to altered. I have been put on BP meds, Iron tabs and vit D but that has made me feel worse . Please someone help

29 Replies
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shaws
shawsAdministrator

I'm really sorry you had to have your gland removed and the fact that you feel so unwell.

I have my thyroid gland and couldn't improve on levothyroxine and I feel that those without a thyroid gland should be given, at the very least, a combination of T4 and T3. When T3 was added to my levo, I felt an immense difference in my body.

Levothyroxine is inactive and has to convert to the active thyroid hormone (T3)and it is needed in the millions of T3 receptor cells and brain and heart contain the most.

Your doctor will not probably do a Full Thyroid Function Test but you can get a private one (ask your GP first if he'll do so).

thyroiduk.org.uk/tuk/testin...

All blood tests have to be at the very earliest, fasting (you can drink water) and if taking thyroid hormones allow a gap of 24 hours between last dose and test and take it afterwards.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

thyroiduk.org.uk/tuk/testin...

GP should also test B12, Vit D, iron, ferritin and folate.

I have my thyroid gland but when finally diagnosed I was in and out of A&E too because I couldn't understand why my body was reacting in a way we wouldn't expect if we've been given replacement hormones.

You state " I am so fed up and I believe it is my medication" and I would agree with you.

I believe that everyone who has their thyroid gland removed, should automatically be given a T4/T3 combination.

There is also another thyroid hormone replacement - now removed from being prescribed - and it is the original thyroid hormone prescribed without blood tests - since 1892 - and slowly increased until patient's health improved and is called NDT or Natural Dessicated Thyroid Hormones, For some reason an Association removed this through False Statements made to do so. Ignoring the fact that many had recovered their health. It contains T4, T3, T2, T1 and calcitonin as it is made from pigs thyroid glands.

cbraffe
cbraffe in reply to shaws

Thank you so much for the advice. I am going back to the doctor tomorrow and will insist to have those tests. I will post my results tests done this week . The way I am feeling, I do not mind paying for the medication. I have bought the NDT I was waiting to speak to the doctor before starting to take it

cbraffe
cbraffe in reply to cbraffe

TSH 1.0mm/L Range 0.3-4.2

Vit D 63.5 Range70-150m0l/L

shaws
shawsAdministrator in reply to cbraffe

Your doctor may not do all of these tests. As your TSH is 1, your doctor believes you are on a sufficient dose. He should consider that as you have no thyroid gland at all, you feel bad and symptomatic. That's what the FT3 and FT4 would reveal. Your Vi D is too low so you need to supplement.

Someone will advise how to increase vitamin D.

cbraffe
cbraffe in reply to shaws

Thank you. I have started taking the vit 2 days ago . Could you please advise on a private message how I can source T3 privately. I am so desperate. I have no life at the moment

cbraffe
cbraffe in reply to shaws

Thank you so much for the information. I went to the GP today and had all the test you recommended. I will forever be grateful to everyone on this sight. This forum is a life saver

TaraJR
TaraJR in reply to shaws

shaws you wrote: "There is also another thyroid hormone replacement - now removed from being prescribed - and it is the original thyroid hormone prescribed without blood tests - since 1892 - and slowly increased until patient's health improved and is called NDT or Natural Dessicated Thyroid Hormones, For some reason an Association removed this through False Statements made to do so." Do you know if there's a document or a paper saying this that we could see?

shaws
shawsAdministrator in reply to TaraJR

The following was by Dr John Lowe (deceased) and every year for three years he requested a response but the Association just ignored his requests.

Probably thought as he was a scientist and an expert in Thyroid Hormone Resistance and the use of T3 that they still knew more than him. They definitely did not and still do not, and the fact that they withdrew NDT through misinformation (polite word) even though many people recovered their health since 1892 they never responded to Dr Lowe's request.

thyroiduk.org/tuk/TUK_PDFs/...

The fact that Dr Lowe, as a young person saw that undiagnosed illhealth affected his family badly, i.e. father and other relatives set him on a course to study hormones.

Due to the following statement by the BTA removing T3 as well as NDT through misinformation Dr Lowe then developed his own NDT (natural dessicated thyroid hormones) that didn't need a prescription and his widow, Tammy, deals with this now. Dr Lowe was angry/disappointed that those who are supposed to be the experts in relieving clinical symptoms and knowing the tragedies that could occur through illhealth, the Association ignored anything he said even though, like Dr Skinner and Dr Peatfield (other pursued doctors) also had the same point of view, i.e. symptoms were more important than blood tests.

Doctors have now lost their skills about one of the commonest autoimmune diseases and before 1892 everyone died a horrible death. What does that say about 'modern' doctors with all the advances we now have, like internet etc.and advancements in other areas, like heart replacements etc, that a refusal to prescribe something that was a 'grandmother' thyroid replacement sent people on a journey trying to source their own or T3. If you cannot afford to, you are in 'no man's land' as we've heard from a lot of members.

The fact that doctors are now wary of prescribing anything but T4, the Association stated that T3 would also be withdrawn, leaving us with no options but levothyroxine. They have now stated that only Endocrinologists can prescribe T3 but I doubt few will do so as it is now so expensive but there should have been an investigation that instead of one provider another two joined and we were hoping that prices would be reasonable but, to our utter dismay, all three seemed to be near identical prices i.e. above £200 for one month's supply!!!

The following might interest you and its by Dr Lowe.

naturalthyroidsolutions.com...

TaraJR
TaraJR in reply to shaws

shaws thanks for this. I agree with all you say. I'm very glad to find the link to Dr Lowe's statement and I've now found the 2007 BTA statement too. It explains so much :-(

If you've been given a prescription for iron tablets you must have iron deficiency or iron deficiency anaemia (probably the latter since you actually got given a prescription).

Low iron may cause tachycardia (very fast heart rate), and/or palpitations, and/or arrhythmia. It can also cause chest pain, extreme fatigue, and breathlessness.

You may have been very low in iron because of the hyperthyroidism you had before the surgery was ever done. People who are hyperthyroid can end up low in all sorts of nutrients.

Do you have the results of an iron panel? a Full Blood Count? results for tests on vitamin B12, folate, vitamin D or any other nutrient? If you have any of these, including reference ranges you could write them in a post and ask for feedback. What iron supplements have you been prescribed and at what dose? If you struggle to tolerate them (many people do) there are prescription-strength alternatives and they can be bought from pharmacies (in the UK) without prescription.

cbraffe
cbraffe in reply to humanbean

Thank you so much.

My results are :

Haemoglobin:135g/L: normal range between (114-150)

Lymphocyte count, blood 2.9x10^9L; normal range (1.1and 3.6)

Red blood count, blood :4.54×10^12L; normal range between (3.73 and 4.96)

Vitmin D level blood :63.5 nmol/L; normal range between(70 and 150)

Nucleated red blood cell count, blood :0.0×10^9/L; normal range between 0.0 and 0.1)

I have been prescribed :

Ferrous Fumarate 210mg twice daily . Thanks so much for the support

I’ve had breathing issues. The hospital gave me a full, lung function test. I found this helpful as it can pinpoint why you can’t breathe as well. They said I had muscle weakness affecting my lungs which was part of the issue. But this can be from under or over medication. You could also be overmedicated for you. I had your issues when I was over medicated. I can tell myself by my weight now as to whether I’m over or under medicated. A good endocrinologist might help you too. Sorry you are suffering.

cbraffe
cbraffe in reply to JaneyJaney

Thank you. I know I am over medicated but since my throid was removed I have had one 3 min appointment with the surgeon he only spoke about the scar only ordered the blood test after the appointment. No after care. Only went to the GP after feeling very unwell who advise I should have had regular blood tests. She ordered some tests and booked me another appointment only to turn up and find she was not available. A locum doctor ordered these other test. My GP only suggested I should rest and do some breathing exercises. I ended up in A&E with BP of 189/89. I have never suffered with blood pressure. I really fed up

Hello cbraffe

Just for reference a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3. I just think it makes sense that after there has been a medical intervention either thyroid removal with surgery or thyroid ablation with RAI that both these vital hormones are on the patients prescription for I and when needed.

Some people can get by on the prohormone - T4 levothyroxine, some people simply stop converting the T4 into T3 which is hormone the body needs in order to function, and some people simply need both these essential hormones dosed and monitored independently, to bring them into balance and to a level f well being acceptable to the patient.

T3 is the active hormone and is said o e about 3-4 times mote powerful than T4.

As you can see without the ability to produce your own T3 you have " lost " natural production and I read that the average person needs about 50 T3 daily to function.

So, ultimately, you have been down graded by about 20 % pf your potential well being.

Conversion of T4 into T3 can be compromised if vitamins and minerals are not optimal and these need to be tested along with the other thyroid hormones and antibodies as detailed. on Thyroid uk.

You may be lucky, your doctor may help you with the bloods, if not you'll need to get them done to then repost, with the ranges, for considered opinion.

Why did you have you're thyroid removed, was it for Graves Disease, as that is an autoimmune disease and comes with another set of issues that may be to be considered /

I'm am with Graves diagnosed 2003, RAI treatment 2005 ( which I deeply regret ) and now have to manage Graves, thyroid eye disease and hypothyroidism.

cbraffe
cbraffe in reply to pennyannie

Thank you for your response. I had graves and TED for 6 years and had thyrotosis twice for a while. It has been a journey. I had radiotherapy for the TED as it was so bad .

pennyannie
pennyannie in reply to cbraffe

I'm so sorry, my TED happened after the RAI, along with a multitude of symptoms as detailed on my profile.

OK, Graves is an auto immune disease and although you had your thyroid removed, you may well still have anti bodies, and it these we need to concentrate on trying to reduce, as well putting you on the appropriate thyroid hormone replacement.

Whilst we wait for your full bloods test results, you might like get started reading up, and taking back some control.

Graves Disease A Practical Guide is written by a woman who has Graves and went through RAI. Elaine Moore now runs a very comprehensive website in the States. she is a medical researcher and there many sections on many areas of your life to consider.

Diet, life style, relaxation techniques etc. etc. and I know when so poorly it's hard to read about relaxing or removing stressors in your life, when your whole life seems like one long stressful time.

Your Thyroid and How To Keep It Healthy is a book written by a doctor who has himself hypothyroidism. Dr Barry Durrant - Peatfield writes is an easy to understand way, and we do need to know about the amazing little gland we have lost, so we can try and compensate for all that it did.

The thyroid is a major gland responsible for full body synchronisation, your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism. It was the conductor of all your bodily parts, and now we have to take up the baton and start rebuilding.

This is an amazing site. My learning curve started a few years ago now, but there is a lot to take in, but it is doable. I'm dyslexic, so my books are pencilled and underlined throughout and my cognitive functions when just on Levothyroxine were severely compromised. I was guilty of reading the sentence several times, and not understanding or remembering anything, and " looking back " this now seems unbelievable to me.

I am now self medicating with Natural Desiccated thyroid which contains all the known same hormones as that of a human gland. There is also the option of T3 but again sadly, as with NDT, very difficult to currently obtain on the NHS. T3 worked for me, but I prefer NDT, it's a personal thing and very much down to your own body's acceptance.

cbraffe
cbraffe in reply to pennyannie

Could you kindly message where you source your NDT . I ordered some from Thailand but I am still dreading doing something that might make my condition worse. Thanks so much. I have bought those books but do not have any strength to read. Will check if I can get them on audio. This sight is a life saver . I believe the support I have received today is far better than several visits to the GP and endocrinologist over the years

pennyannie
pennyannie in reply to cbraffe

I thought I read you had already purchased some NDT - it contains :- T1. T2, T3 and T4 plus calcitonin, with most brands containing : 38 T4 and 9 T3 per grain/tablet.

It will be easier to get T3 on the NHS should you " qualify " in your CCG area.

If you can manage the assault course and get to see an endocrinologist who will trial you with some T3 with your T4 that is probably the best first option.

In this way you'll have some help and each portion of the T3 and T4 can be adjusted independently to find a ratio of T3 / T4 that works for you.

I read people's ratios are usually between 1/3.5 to 1/ 4.5 - T3 to T4 - the ratio in NDT is 1/4 T3 to T4 and read of some people adjusting the NDT with a bit more, or a bit less T3, or T4.

NDT seems to be very hard to get prescribed, so maybe keep that in your back pocket with a view only to use it if the NHS decline you a trial of T3.

It's got to be better to have the NHS on side to help and monitor you, I'm self medicating out of desperation, as I've received no help or acknowledgement with any of my symptoms.

Best to keep all options open, it's early days, so keep us posted and lean on us as you go though the system, there are plenty of people here to support and help you.

cbraffe
cbraffe in reply to pennyannie

Thank u.

pennyannie
pennyannie in reply to cbraffe

I've just looked on Amazon and several of Elaine's book are on " kindle " - I didn't know she had written so many.

The one I mention, details her treatment, I believe, of the RAI treatment and how wrong this is, it's not an easy read and have to confess I " skipped " sections as it gets technical, and I got lost and too upset just trying to read and understand it all.

There are a couple of books that seem to approach this disease from the " eye " aspect -and might be a better choice - there are some on kindle, but I couldn't see any audio options.

There is also one dealing more with the autoimmune aspects, but just be warned, she writes from a technical, medical back ground, I think the website is more patient

focused and in layman's language.

Her website covers many aspects, and maybe that might be an easier option in the first place.

Dr Barry DP has written a couple of books, on kindle, though no audio.

cbraffe
cbraffe in reply to pennyannie

Thank you. Will check it out. I hope you are doing ok this morning

That’s awful. Everyone on here on Levo is usually having issues with undermedication. With a TSH of 1 you will get told you are undermedicated. But there are a few of us without a thyroid and on doses of less than 100mcg of a Levo. I’m been over medicated until about a month ago. I think it’s presumed without a thyroid we needs lots of Levo, but some of us don’t. I found being overmedicated made me skinny, so my Levo need was lowering maybe.

cbraffe
cbraffe in reply to JaneyJaney

I have put on 2 stones in weight

JaneyJaney
JaneyJaney in reply to cbraffe

What’s your appetite like? Have you been very hungry. When I was overmedicated I lost my appetite. I guess you could still be overmedicated if you eating a lot.

cbraffe
cbraffe in reply to JaneyJaney

No apetite at all. My BP is high too

JaneyJaney
JaneyJaney in reply to cbraffe

I think you need a good endocrinologist and go through everything. It seems odd to put on weight if you are overactive and not eating. But I’m no expert.

cbraffe
cbraffe in reply to JaneyJaney

I have no thyroid. The weight gain was dur to steroid treatment for TED and have not put if off since

cbraffe
cbraffe in reply to JaneyJaney

Thank you.

Thank you all for your help and advice. I went to see my GP and had to demand a full thyroid check .

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