Hi everyone, I’m a 48 year old woman desperate for some answers. I started off with an overactive thyroid in 2012. Two shots at radio iodine treatment have rendered me hypo. I’ve reduced my thyroxine from 150mcg to 50mcg over the last few years. My GP is now telling me i’m Within normal range but I feel horrific. I can’t get through the day without a nap, I have zero energy, piled on weight. My periods are few & far between but the last one lasted 5 weeks and the blood doesn’t clot. On top of that, my memory is shocking and my cognitive ability is diminishing rapidly. As a teacher, i’m Seriously worried i’m not going to be able to do my job for much longer. I’m at my wits end. I live in Scotland and have private healthcare but can’t seem to find a consultant who thinks outside the box. Please help.😓
Can’t find a good consultant: Hi everyone, I’m a... - Thyroid UK
Can’t find a good consultant
Hi, thank you for replying. I don’t know my exact result but I have a GP appointment in next couple of days so will get a print out. GP tells me I have symptoms of thyroxine overdose and my results are in normal range. Problem is, I’m not up to speed on All this. Feel like I need a medical degree! My tests have been at various times of day and I don’t fast before them. Have never been told not to take thyroxine before them either. Have no idea what NCD is and only thing GP tells me is that 50mcg is a unusually low. Apparently as my blood tests are normal that doesn’t merit seeing a consultant on NHS.
I was in a similar position and have moved to self medication with Armour. There is help to be had on this site.
janveron1
Thank you. I’ll have a look.
I go to Paul Carroll but he is at St Thomas Hospital London or Privately at London Bridge Hospital.
You must check carefully any Consultants area of interest. Many do Diabetes and know 0000 about Thyroid !!
janveron1
Yes, that’s exactly what I keep finding. It’s very difficult to get someone who just does endocrinology. Especially in Scotland!
Brilliant! Thanks for your help!
Hello Blanche
Do you have Graves Disease and was this why you had RAI ?
I'll presume yes, as this was my treatment for my Graves, but I only had one toxic dose.
OK Graves is an autoimmune disease and as such you have it for life, it's in your blood.
There is probably some genetic predisposition, maybe a generation away from you and a sudden shock could have triggered your Graves Disease.
I'm guessing your thyroid was ablated with the radioactive iodine to burn and kill it's function in an attempt to stop your going hyper, overactive.
Your thyroid was the victim in all this and not the cause.
The cause being an attack on your thyroid by your immune system.
True if not treated Graves is considered life threatening, but removing such a major gland, can come with it's own set of problems.
The Nhs believes it can manage hypothyroidism better than it can hyperthyroidism and the action of simply swopping one set of symptoms for a different set of symptoms is somewhat simplistic.
But we are where we are.
A fully functioning working thyroid would be supporting you with approximately 100 T4 and 10 T3 daily.
If you have Graves we have TSI/TRab antibodies that sit on and control our TSH thereby making this one reading a very unreliable measure of anything.
Having had radioactive iodine your feedback loop is broken and the conventional blood testing routine is not appropriate.
It is essential that you are monitored and dosed on T3 and T4 blood tests with a view to balance both these vital hormones into the upper quadrants of their relevant ranges and to an acceptable level of wellness to the patient.
You might like the following :-
Graves Disease A Practical Guide by Elaine Moore - this lady has the disease and drunk the RAI. She has now also a very comprehensive website on all things Graves - it is USA based so medical protocol is slightly different but it is well worth a visit.
Tired Thyroid by Barbara S Lougheed - from hyper to hypo to healing - this lady also has Graves and drank the radioactive iodine. Amongst other things she debunks the over reliance placed on the TSH in the management of this disease.
Your Thyroid and How to Keep It Healthy by Dr Barry Durrant Peatfield - this doctor has hypothyroidism and his book is an excellent read on all things thyroid, and since we don't have one to keep healthy we need to compensate for all that it did, when we were well.
There is also a very interest article written by Professor A Toft an eminent endocrinologist how still offers his services out of Edinburgh.
Thyroid hormone replacement - a counterblast to guidelines.
Journal of the Royal College of Physicians of Edinburgh - December 2017.
I think this is easily found on this website, somewhere, sorry, don't know how to resurrect it for you. If with " brain fog " attempt the final page where Rai is mentioned and the addition of T3 when Levothyroxine doesn't work as well as it might.
Everything you have said is spot on! I’ll get reading. I’m just done with the NHS. I can’t believe how many people are on here with similar experiences. It looks like i’m Definitely going to have to educate myself. Thank you so much for all the tips.
There's a rumour he's completely retired 😟
Sounds like your GP is clueless and only testing TSH
After Graves especially (but for many other patients too) dosing according to TSH is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves or Hashimoto's
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
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
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
Getting vitamins optimal and TSH low enough is first step
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many especially after RAI
rcpe.ac.uk/sites/default/fi...
british-thyroid-association...
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Dossier presented to Government November 2018
drive.google.com/file/d/1c2...
healthunlocked.com/thyroidu...
Liothyronine gender inequality
england.nhs.uk/wp-content/u...
Recent media coverage on T3
thyroidtrust.org/media-cove...
medscape.com/viewarticle/90...
Many endocrinologists are pressurised by your local health board to deny patients need T3, due to cost
You might find this helpful
gov.scot/binaries/content/d...
Oh wow, this has really opened my eyes. It’s so disappointing that the NHS is so inadequate. I’ll print off everything you suggest and get private blood tests done. Then take it from there. I’m also going to investigate how to take this forward with NHS Scotland. I can’t tell you all how grateful I am for your support and guidance. Thanks for being there for everyone x
This is why there's nearly 100,000 members on here
Current treatment is beyond a joke
I too have read that he has retired (though when I read, it said he was just about to retire).
Yes I was at that meeting
He's no longer listed on private hospitals in Edinburgh
Your comments on RAI are upsetting and I am sorry they are not necessarily true. I had recurring Graves’ disease and was seeing an excellent Endo privately for a couple of years. Despite trying to sort it out her clear advice was to have the RAI treatment. I researched it myself and decided to go ahead and Ive not seen posts on here telling people to ‘ avoid RAI at all costs’. Thankfully I seem to be on the right dose of Levo and I feel well. How can you say that RAI damages the cells that convert? What evidence do you have for that?
I do think you have to be careful posting things like this. It’s worrying for people who have already had the treatment.
Sorry to hear about your husband’s problems but I can’t be the only person who has been OK since RAI. It’s interesting that there are differences in views even among the endos as yours said RAI was unsafe and mine recommended it!!! We’re fighting a losing battle.
I don’t really understand what NDT is or how to get it but I will be seeing my endo again at some point so I will have the discussion with her.
It contains T4 T3 T2 T1 and calcitonin which is what a normal thyroid produces
You keep saying that the "normal" thyroid produces T2 and T1. All the evidence I have ever seen makes it clear that the majority of T2 in the body comes from deiodination of T3. Virtually none directly from the thyroid.
NDT is natural dessicated pigs thyroid which was used for over 100years until levothyroxine was foisted untested onto the scene
If you check my very recent post here, you will find that in 1907, sheep thyroid appeared to be standard in the UK.
healthunlocked.com/thyroidu...
(The use of pig thyroid in the USA was probably accelerated by the Armour Meat Packing company which had vast quantities of pig thyroid as a source material. Pigs have various other advantages as well such as being less affected by season.)
I think there were several makers over the years. This is one from the Science Museum collection:
Empty 1x250 bottle for thyroid tablets B.P. 1/2 gr., by Ayrton Saunders, 1940-1970
The links below identify two further companies - but one of the letters refers to "several firms" making thyroid tablets. Published 23 June 1934:
Brady and Martin Ltd., Newcastle-on-Tyne
Allen and Hanbury Ltd., Bethnal Green
Not untested, was developed as treatment for U.S. soldiers suffering from endocrine failure from radiation poisoning because they worked at nuclear test sites circa 40'sand 50's. The irony is the majority died from their symptoms. The synthetic thyroid that was put in mass production for the pharmaceutical industry is reported to have Sooo many painful uncomfortable miserable side effects as we can all testify to. The not funny funny part of that is as the test subjects it was developed studying were also suffering from radiation poisoning how could the symptoms of the medication be differentiated between the symptoms of the radiation poisonings that caused their test subjects endocrine failure? Modern midevil medicine?
Product licences are specific to the product.
As I understand, if a company wanted to manufacture desiccated thyroid, they would have to apply for their product. Licences only get transferred when companies merge or are taken over.
I don't think there is any categoric reason a company couldn't apply. But they would have lots of bridges to cross.
You are crossing from my answer about the UK to the USA. May have many similarities but is a different system.
Doesn't matter where the ultimate owner is, the applicable law for USA companies even if subsidiaries is that of the USA. And it is the FDA which handles product authorisations.
I agree was not properly controlled testing yet was the basis for the development of today's synthroid. That was the point I was trying to elaborate there was no differentiates between symptoms of radiation poisoning and negative impact of synthroid treatment in its initial development and the synthroid developed in the 1950's is chemically identical to what is still being used to treat hypothyroidism today.
Blanche I hope you find someone who can follow up with you soon. Hang in there! Make sure that you continue to advocate for yourself! Hopefully find a Dr/specialist educated on most recent findings: mineral rich nutrition and for a majority natural dessicated thyroid prescribed based on patient weight and symptoms rather than lab findings alone can improve quality of life. If your symptoms are worsening do not I repeat do not set back and be silenced myxedema coma is no picnic and that is what comes from untreated hypothyroidism. Unfortunately when we feel our worst can be when we have to put in the most effort to make a difference for ourselves! Educate yourself regarding your condition advocate and you will find someone who can help you. Just keep pushing. Best wishes
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