I went mad in 2016. Nothing was too crazy for me. I even considered driving off a cliff. The madness was accompanied by paranoia and doubt which got very dark indeed. After several, desperate visits to my GP (who tried in vain to help) a visiting locum took one look at me and having familiarised himself with my notes in preparation, (saw my long battle with obesity) and…
When I presented as a “slim Jim” he said I’d better have my thyroid checked. Sure enough, I was way over the top. Totally Hyper!
I was put on Carbimozol, Apixaban & Bisiprolol. Some time passed and tests were on going. Due to persistent AF and by now, a diagnosis of Graves, I was lined up for either a Thyroidectomy or Radio Iodine and sent to the local Endocrinologist. The one request I had was: “please don’t make me fat again”. I was reassured that weight gain could/would be managed so a took the pill at Christmas 2019 so I could isolate (before self isolation was even a thing!) to prevent irradiation of innocents in the days afterwards.
I knew, in the time preceding the treatment that I had “levelled out”. My weight had stabilised and my mental state was as lucid as I’d ever felt. I was fitter than I’d been since school and my self esteem was as good as it gets. Despite saying all this, the treatment went ahead.
It took a while to be put on Levo but in the spring of 2020 I started on a small, religiously taken dose. Despite a low fat, sugar and carb diet, I began to gain weight. A trail of covid interrupted tests and subsequent hikes in Levo dose allied with verbal and written pleas to my GP re someone approaching 60 years of age gaining weight (especially with cardio complications in the previous generation), the reassurance that things could and would be managed, has not been accurate.
I’ve put on 30 kilos. My body is in musculoskeletal pain and don’t even ask how I feel psychologically. Ok, I have to tell you anyway: no energy, no libido, no fun.
I’m now on 250mcg of Levothyroxine.
Can anyone help or advise me please.
I’ve tried writing and talking to my GP but it seems I’m done for.
Apologies for the self indulgent rant & thanks.
Paul.
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In order to help you the first thing we need is information on your most recent thyroid blood tests and also some vitamin and mineral levels. I'm not suggesting that the NHS has done all the following tests for you - but however many of these you've had done it would be helpful to know the results and the reference ranges, and when they were done (date and time), and whether they were done fasting or not.
TSH
Free T4
Free T3
TPO Ab - TPO Antibodies
Tg Ab - Tg Antibodies
Vitamin D
Vitamin B12
Folate
Ferritin (iron stores)
and if you've ever had an iron panel done :
Serum iron
Total Iron Binding Capacity (TIBC) or Transferrin
Transferrin Saturation Percentage
Ferritin
C-Reactive Protein (CRP)
.
Low iron can cause weight gain. This link is aimed at women, but I can't see why it wouldn't apply to men as well.
If you felt well before RAI you should have been allowed to stay on the hormones and medicines you were on at the time, rather than taking radioactive iodine. Giving patients RAI is often done for the doctor's convenience, rather than the patient's well-being or convenience.
But there are many things we can do to help ourselves, rather than relying on doctors, and that is what many of us do on this forum. For example, having low levels of nutrients is extremely common with thyroid disease, and many of us get private testing done, without involving doctors, and using finger-prick testing which is sent to a lab via the post. And supplements required to improve nutrient levels can be bought on many websites.
Despite a low fat, sugar and carb diet, I began to gain weight.
There are only three macronutrients that food for healthy humans can contain - fat, carbs and protein. Two of those are mandatory for staying alive, and one is optional. The optional one is carbs. Fat and protein are mandatory - people can't live without them. If they try they will eventually die.
Having said that, people with thyroid disease have all sorts of problems with gut health, and most of us have to have some carbs too. Ideally those carbs would come from complex carbs (e.g. vegetables and pulses) rather than simple refined carbs like chocolate and ice cream.
Too little fat in the diet can cause depression and will affect mental health. Including fat in the diet increases satiety and reduces the risk of going on a sugar binge.
I would ditch the low fat part of your diet and include more in your diet. The healthiest fats are the ones that people, somewhere in the world, were familiar with before the Industrial Revolution. Laboratory produced and processed fats and oils should be avoided. Nobody ever got vegetable oil out of corn 250 years ago.
Do you have any current results? You are legally entitled to your record, many set up online access or arrange print out via practice reception.
Weight gain, musculoskeletal pain, & low mood all sound as if you are under replaced. This often happens because doctors look at TSH levels, the thyroid stimulating hormone which is a pituitary hormone which signals thyroid.
Doctors assume if the TSH is in range so are thyroid hormones. However if you every been significantly or prolonged hyper this signal can become down regulated. If you have poor nutrients, which is common when hypothyroid, the TSH can fail to rise & reflect low thyroid levels. There lots of reasons why the TSH isn’t reliable.
Most feel well with TSH around 1, but doctors will often state if it’s in range it’s acceptable.
What you really need to know is if your actual thyroid hormones are good. If the FT4 (free thyroxine) level is good & if your body can convert well to the active thyroid hormone FT3 (free triiodothyronine). Most feel well when FT4 in top 3rd of range and FT3 over 50%.
Lab ranges vary so you need a printout of you results with lab ranges for each test.
250mcg is a fairly high dose of Levo. An approximate level is said to be 1.6mcg per 1kg of body weight.
Do you alway have the same brand? Do you take levo away from food, other medication & supplements?
Do you have stomach issue which might affect absorption?
Recommendations for thyroid test
A - Always check what’s being tested & collect test results with reference range.
B - Biotin - cease 3 days before draw to avoid possible test interference
C - Consistent unchanged dose - minimum 6 weeks previously before retest
D - Delay replacement dose on day of test (take after blood draw)
E - Early morning appointment. (Book as close to 09.00 as possible)
F - Fast overnight. This can have a slight impact. Drink lots of water
Yes I agree, you need more complete testing to know if you are converting L-T4 to FT3.
Your results show TSH low & FT4 high *by most ranges, but that doesn’t guarantee your FT3 is at a good levels.
Was FT4 above range ?
Ranges can vary so it may be significant or borderline high.
If you like to know FT3 at a low cost as possible Monitor My health offer basic function (TSH, FT4 & FT3). Sample taken by home finger prick / & posted back. With discount (on link) it is under £30.
For a fuller test with thyroid antibodies & key nutrients & CRP inflammation marker there is Medichecks. Can also be by fingerprick sample or can pay extra fee for Venous draw at clinic or nurse to visit.
There’s a list of companies with available discounts on this link.
Makes me so angry for you that you weren’t listened to and had surgery despite feeling ok. Sending big virtual hug. You’re in the right place for good advice to get you back on an even keel. pennyannie is excellent on Graves so copying her in.
I too have Graves Disease and went through RAI thyroid ablation back in 2005 though well on the AT drug but told at my very first endo appointment it was too dangerous to stay on long term and so drank down a can of toxic waste to burn out and disable my thyroid from within.
If you press the icon alongside my reply to you this should take you direct to my profile page where you can read, if interested, my thyroid journey and everything I 've ever written and replied to on this forum.
Same applies to any forum member if you want to find out more about their health issues and outlook.
OK - so - just for reference the most recent research is suggesting that the longer the patient stays on the AT drug and better the long term outcome is for the patient :-
We also now know that RAI thyroid ablation is the worst treatment option and quite why it is still even suggested, let alone be the first and only treatment option offered for some patients, in what we presume to be a health care setting is beyond my understanding ;
So, I have managed to come back from this as best as I can - and first and foremost we need to see some blood test result and ranges as already detailed by others.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings but I'm afraid in primary care you likely only get a TSH reading which for Graves Disease is a very misleading reading.
After RAI thyroid ablation the HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop on which the TSH relies as working - is no longer a full loop as the thyroid has been disabled and burnt out and ' this loop ' not a full circuit any longer.
While you wait for the full thyroid blood panel blood test results and ranges to be actioned - hopefully my your doctor, but I'll not hold my breath -
You might like to read around Graves Disease and Elaine Moore has written several books - her first being pivotal for me though extremely challenging at the time - ( I'm dyslexic and had that dreadful brain fog ) - there is now a website which is more patient friendly and in smaller chunks to chew over and devour.
Elaine has Graves and went though RAI thyroid ablation around the turn of the century and finding herself eventually no better, but a lot worse, and with no real answers from the medical mainstream and being, herself, a medical technologist in the States believe Elaine started researching and writing to try and help/advise mainstream medical.
I think it's also essential to have a basic knowledge of the body and how it all works together and Barry Durrant-Peatfield's book Your Thyroid and How To Keep it Healthy is an excellent source of information, written for patients, to enable them better to advocate for themselves.
Thyroid UK the charity who support this forum have a Library section where I think you'll find these and other options. thyroiduk.org
I totally get that ' you feel feel done for ' - but you can, and will, come back from this -
It'll take a little time and you will need to become your own best advocate.
It may mean actioning your own blood tests privately, getting knocked back by mainstream medical, and ultimately self medicating and Doing IT For Yourself - buying your own full spectrum thyroid hormone replacement and also supplementing various vitamins and minerals to strengthen and build back your body's core strength in order to reclaim your health, well being and ' your you ' :
Hope that helps a bit - you are not alone with all this - and forum members here are all amazing and we support each other :
“After RAI thyroid ablation the HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop on which the TSH relies as working - is no longer a full loop as the thyroid has been disabled and burnt out and ' this loop ' not a full circuit any longer.”
This is the part I have taken away. My TSH is, in my GPS words “nonexistent “ & that is his basis for ongoing assessment of treatment.
When I suggested being referred back to the endocrinologist, the gp went seriously god complex on me. Defending himself with the assertion that he knew far more about the management of my thyroid, post RAI, than the consultant ever would.
This disarmed me as I had nothing to counter with.
My question is this: do you have the source for the above so I can read more please. This might help me “fight my corner”.
If the TSH is at once, unreliable and the basis for decision making I feel I need to be equipped to say so.
OK - I've read many research papers and listened to several videos and read a few books but I can't do ' cut and paste ' and have no real short cuts to helping you find your answers as nothing helped me get better thyroid treatment and I now self medicate, run my own bloods and DI Myself.
Some clues -
If you look up Professor A Toft - first - check out this man's career :
You should also find what I believe is an instrumental video ( on youtube ) entitled :-
The Management of Hypothyroidism
and a paper printed in 2017 in the Royal College of Physicians of Edinburgh during n his retirement year from the NHS entitled :-
Thyroid Hormone Replacement - A Counterblast to Guidelines :
You need to read it all, and highlight what you feel relevant but on page 3 he states :
I am so concerned about the state of advice on the management of primary hypothyroidism that /i m increasingly reluctant to suggest ablative therapy wit iodine 1-31 or surgery in patients with Graves Disease irrespective of age or number of recurrences of hyperthyroidism.
Treatment with a thionamide, in which the hypothalamus-pituitary-thyroid axis remains in tact, making interpretation of thyroid status simpler, is currently a more attractive proposition.
Thionamide - are Anti Thyroid drugs such as Carbimazole or Propylthiouracil (PTU) :
So I take this to mean when you have had RAI thyroid ablation this feedback loop is broken - I think he also speaks about this in the above video :
These are both available on here as well, somewhere, but I don't know how do that bit !!
elaine-moore.com - Elaine has Graves and went through RAI and then feeling no better, and being medical researcher focused her future life researching this poorly understood and badly treated AI disease.
Barbara S Lougheed - Tired Thyroid - from Hyper to Hypo to Healing - Breaking the TSH rule: Another lady who went through RAI and found she only recovered by breaking the rules.
Hope this helps a bit - hopefully someone might pop along who can do the cut and paste for me !!
If you step back - and think a bit - your thyroid was burnt out in situ by the RAI -
Why would the mainstream medical still want to see ' normal function ' and expect the feedback loop to work -
We had our thyroids disabled to stop the ramping up our thyroid production :
The Graves antibodies are still circulating in your blood- it's an auto immune disease for which there is no cure - the short cut is to cut the engine - cut the feedback loop -
The Graves antibodies may still be sitting on TSH receptor sites driving down the accelerator of thyroid hormones - but without a thyroid in situ to ramp up - it does not matter - as we are not on automatic any longer as we have to manually put our fuel in the body - in the form of thyroid hormones replacement.
You might liken it to being in a car with your foot stuck down on the accelerator pedal but if there is no engine or petrol in the tank- you 're not going anywhere.
Why do mainstream medical expect an ' in range / normal ' Thyroid Stimulating Hormone function blood test when there is no thyroid to stimulate ?
They have treated our thyroid with a toxic substance that ultimately burns through, rendering the gland totally disabled - why would they expect a normal reading as if we had a normal, functioning thyroid !!! ?????
I really felt for you reading your story. When the doctor brightly told you your weight would be managed I knew it was going to take a turn 😱😱😱
Funny how the doctors are always warm, open and relatable BEFORE they destroy our thyroids. I was also really worried about weight gain when I found out I has thyroid cancer and would have mine removed. The one semi silver lining to that story is that by the time I did gain a lot of weight so many worse things had happened to me that I didn't really care.
You've been given a lot of good advice here. I recommend making yourself a brand new post once you've had a good set of blood tests done and members will advise you.
I was very bamboozled at first when I was asked to provide all these blood tests my doctors had never done. Most members will send off for mail order, finger prick private tests. Several companies will do a package test that includes everything members have mentioned here:
TSH
FreeT4
FreeT3
Ferritin (stored iron)
Folate
Vitamin D
Vitamin B12
Antibodies... Unfortunately it is usually Hashimotos (causing autoimmune underactive thyroid) antibodies included in the packages. I don't know as much about Graves antibodies, but getting them tested is probably not as urgent because we know you will have Graves antibodies for life, but as your thyroid has been put out of commission they can't be as disruptive. A difficulty with having a thyroid illness that isn't Hashimotos is that almost everything written about thyroid sufferers is aimed at them and about that illness because they are by far the largest group. The semi good news is that once we've had our thyroid bashed up and become underactive almost everything written about Hashimotos will apply to us, it is only in the little bits of specifics about each condition that we vary. So when ordering test packages you will often find yourself getting Hashimotos antibodies tested because it is no cheaper to avoid them.
Anyway, the main thing I wanted to mention to you is that there is a page on the ThyroidUK website listing the main places to order a test kit: thyroiduk.org/help-and-supp...
I think Medichecks and MonitorMyHealth are currently the most reasonably priced for this at the moment. Blue Horizon also does this type of test, but is a bit more expensive and also a bit better customer service I think if something goes wrong.
Once you've got those results you can make a brand new post, as I've mentioned. It can also be useful to dig up any results you've had from the doctor and include those in the post even if they're very sketchy, as change over time can add a lot of detail to analysing them.
I was actually quite surprised when I was able to see all the results from before and straight after my operation and RAI.
There are other companies but I'm not familiar with them
...
Once you've had comprehensive testing you may want to do more targeted testing of just thyroid (TSH, Free T4, Free T3), and might want to do them often while you are trying to find your "sweet spot" with regard to dose.
If you want to "go big" and get liver function, kidney function, full blood count, a few electrolytes, diabetes (HbA1C) and some other things, and you live near a Spire hospital :
I've done the Comprehensive Plus VIP test from that link a few times, usually every 12 - 15 months. Unfortunately it doesn't include Free T3 so I have to pay for that with either a Medichecks or Monitor My Health test.
...
If your ferritin is very low or very high, then it is worth getting an iron panel test done to tell you more about your iron status :
Lots of people on the internet will tell you to get a "Reverse T3 Test". Don't bother. It's very expensive, has to be sent off to the USA to be done, and won't tell you anything that you can't get from a TSH/Free T4/Free T3 test,
Also, magnesium is not a very reliable test. Less than 1% of the body's magnesium is found in the blood. See Table 2 on this link :
When the blood stream runs a bit low on magnesium the body will steal it from bones, soft tissues, muscles etc. So the blood stream results could be good while other parts of the body are low or deficient.
As a result, when deciding to get a test package done, don't be swayed by the fact that one test package may include magnesium while another doesn't.
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Struggling W/ Graves and Weight Gain
Thyroid Healing
Newly diagnosed
Getting My FT3 back up again and what about RT3?
