After 4 years with an overactive thyroid I was given a radio-iodine tablet. two and a bit months later I was cured "celebrations". 14 months later I became underactive. Off to the Doctor, they had said it would be easy with thyroxin. At first it was, but every 5 months or so I would have the following symptoms. Early morning nausea and feeling terrible. The doctor would test for all sorts of issues but could find nothing. Sometimes it would go away, relief. a few months later return. Having started on 25mgs thyroxin I progressed to 75mgs. I tried to keep tabs on my blood readings and it seemed I was about my best around a TSH of 1.0. In 2015 they seem to drop Free T4 & T3. I had a bad spell Oct 2016 when my TSH was at 7.4. In Feb this year feeling all the normal symptoms TSH was 2.8, after all the usual tests my thyroxin was incread to 100mgs. Unusually all was O.K. in about 2 weeks, normally a change would take 4/5 weeks. Grateful I felt well again, I launched my self into a busy June/July. End of July it was back same symptoms but a little worse. TSH was 0.4 Free T4 was 17.3 all seemed O.K. but I wasn't. Over the last 3 years I have been taking a variety of antidepressants, never seemed to work and they were changed, I was never convinced they did anything. In the last 10 days it has got to a point of wanting to go to A&E I felt so bad. Tempory doctor last Thursday was very sympathetic and looked at everything. Seem to give me a positive uplift, even though she found a heart murmur. Instant ECG, all O.K. now awaiting a scan. I'd lost my appetite and my best thoughts are I'm suffering drug withdrawal symptoms, after stopping the antidepressant, after a week I started a new type, three days later I was even worse. This new tablet was stopped and I've been left without anything. Seems like cold Turkey, but this weekend I was starting to improve. Phone call from the Doctor this morning has cut my Thyroxin tablets back to Feb, levels. Just looking at the blood test from last week I can see why. TSH 0.48 Free T4 28.8 The question I have is, I had the same symptoms back in February when we increased the Thyroxin. The old grey cells are working overtime to understand this, never seems to be an answer.
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MargaretMMF
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Many thanks I'll ask for a vitamin test on Monday. I missed of the T3 in my first note, If you look at my reply to SlowDragon it will update my position.
OK, so you're a poor converter and your FT3 is too low. And, keep upping and downing your levo just isn't going to change that. But, I doubt an endo would understand.
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 if you are poor converter of FT4 to FT3
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
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)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Apologies for not replying sooner and many thanks for the information, which has taken a bit to digest.
Not helped by the continuing nausea and just feeling very ill. To update I missed off the free T3 reading, my last test results were: TSH 0.48 Free T4 28.8, Free T3 4.9, T4 being the reason my doctor reduced Thyroxin from 100mgs to 75mgs. Though i was in the same position in February. So not convinced this is going to work.
Last night was bad, awaking at 4.00am perspiring heavily and feeling awful, nausea kept me coughing and reaching, but not actually sick. I tried calming methods that had worked before, but not this time. Laying down seems to bring on this awful feeling. I have an appointment with my doctor on Monday. I just hope I can cope till then.
I've just run out of things to get me through this.
Ask GP to test vitamin D, folate, ferritin and B12
Plus also retest thyroid making sure to get blood test as early as possible in morning and before eating or drinking anything other than water. Last dose Levothyroxine 24 hours prior to blood test
Or test privately if GP is unhelpful
Can you add the ranges on FT4 and FT3 results
FT3 looks low
Common for conversion to get worse when on inadequate dose of Levothyroxine....as vitamin levels drop
Conversion also gets worse if dose of Levothyroxine is reduced
Night sweats can be low B12
After RAI you almost certainly need full replacement dose of Levothyroxine. That's approx 1.6mcg per kilo of your weight.
75mcg is very small dose
Email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3 if needed
It's an anti-depressant that can be bought without a prescription. Search for it on Amazon and read the reviews and check the ratings. It has few, if any, side effects in most people as long as they don't take too high a dose.
There are several things you should know before trying it (if you decide to do so)...
1) It doesn't work for everyone. If it hasn't had any noticeable effect on your mood within a couple of weeks then give up on it.
2) It has few, if any, withdrawal effects, in my personal experience - for what that is worth(!), although like any AD I wouldn't suggest coming off it cold turkey.
3) 5-HTP raises cortisol.
4) 5-HTP is sold in 50mg, 100mg, 200mg and 400mg doses. I would suggest anyone trying it should start on 50mg per day, and only raise by 50mg at a time if necessary. I take 50mg per day (in the evening because it makes me a tiny bit sleepy), and if I take 100mg it gives me the jitters, probably because of it raising my cortisol. But with 50mg I'm fine.
5) Anyone who starts 5-HTP on a high dose is making a mistake. If they get away with it then they are just lucky. People should always work up from a low dose to a higher dose carefully and not too quickly.
[Like someone I know... She thought that because 5-HTP was sold by Holland & Barrett it must be innocuous and harmless. She took something like 6 or 8 of them in one go and nearly ended up in hospital. She's lucky she didn't kill herself with serotonin syndrome.]
6) ADs of any kind, whether prescribed or bought over-the-counter, should never be mixed because of the danger of serotonin syndrome, which can be fatal. Opiates and some other painkillers can also be implicated in serotonin syndrome. So can some herbs, some street drugs, some anti-psychotic medications, and other drugs used in mental health treatment.
I've been taking 5-HTP since 2011. For most of that time I have taken 50mg per day, but a couple of years ago I reduced (fairly slowly) to taking it three days a week. I haven't had any long-term effects from doing so. I'm not in a hurry to reduce further, but I may do, one day.
.
I think some of your more recent symptoms may be caused by going cold turkey on your ADs. It simply isn't safe to do this. You may find this forum helpful :
Hi Humanbean.,I have read through your comment and I must say 5-HTP sounds interesting.
At the moment I'm willing to try anything because of the way I feel.But I will try and get through another2 weeks and see how it goes.If nothing has changed then I will either get back to my consultant or take your advice and try 5-HTP.
but anyone who hasn't tried 5-HTP before should buy a smaller quantity. Some people will take 100mg or 200mg twice per day, some might take 50mg or 100mg, three times a day. My dose of 50mg once a day is extremely modest.
If you try 5-HTP, find it helpful, and end up on 100mg, two or three times a day then next time you buy you should buy a dose more suited to the amount you are actually taking, i.e. buy 100mg tablets rather than 50mg, to save money.
I've bought other brands in the past but they are either only available at silly prices or are not available at all on Amazon e.g. "Now", "Best Naturals", "Oxford Vitality". It would be worth trying the manufacturer's website. And also check out other sources besides Amazon e.g. Ebay or other supplement websites.
Be very careful with the descriptions of 5-HTP, and always, always check the back of the bottle or packet before buying. This is a recent trend on Amazon that they will tell you the amount of plant they get the 5-HTP from, and then tell you the strength of the tablet as well.
This one, for example - absolutely NOT recommended because the description is clearly intended to confuse :
5HTP ā 400mg Griffonia Seed Extract ā 240 Vegan Tablets ā 8 Months Supply of High Strength 5-HTP - 50mg from 400mg Griffonia Seed Extract ā Made in The UK by Nutravita
The description refers to 400mg twice, and also refers to 50mg, also refers to "high-strength". I wouldn't buy these because I think they have gone out of their way to confuse the buyer. I think they are 50mg tablets (which are NOT high-strength), but I'm not certain so I wouldn't buy them. If they really contained 400mg of 5-HTP they would make me extremely ill. And the sad thing is all the Amazon suppliers seem to be following suit - competing to confuse their potential customers.
There are also several reviews of this product which are not complimentary for the same reasons as I have given.
Edit : 19/09/2023 Despite the extremely poor and misleading description for this product I did (reluctantly) buy it a little while after I wrote this post because it became one of the very few 50mg products available on Amazon and the comments did confirm it was really a 50mg product. (It turned out to be okay for me personally.) The higher dose products 100mg or over have become more popular than the lower doses. Since 5-HTP raises cortisol I think this is a really bad idea unless people know they have low cortisol, but that's just my personal opinion.
I also wouldn't take any 5-HTP which had added ingredients like vitamins or minerals.
This is another 5-HTP I wouldn't take. I can't see the dose on the packaging because the pictures are so blurry.
Graves is an auto immune disease and as such it is for life, it's in your blood, your DNA.
Your thyroid was the victim of an attack by your own immune system.
The thyroid is a major gland responsible for full body synchronisation, your mental, physical, emotional, psychological and spiritual well being, as well as being in control of your internal central heating system and your metabolism.
When the thyroid is under attack, it can be said to be life threatening because it is such a major gland and living without such a major gland can come with it's own set of problems, especially if you can't access the appropriate thyroid hormone replacement on the NHS.
I became very ill, some 8 years after RAI treatment and you can read my profile page for more details, should you wish.
It is imperative that you are monitored and dosed on T3 and T4 blood test readings.
In Graves patients the name of the game is probably " ignore the TSH " which goes against all the doctor's guidelines that he has to follow to keep his job.
After RAI for Graves the feedback loop is broken, but doctor's do not seem to understand this anomaly and continue to monitor with limited understanding.
Some people with Graves after RAI ablation or thyroid surgery can get by on T4 alone, some people simply stop converting the Levothyroxine ( T4 ) into T3 at some point in time, and some people simply need both these vital hormones dosed and monitored independently to bring them into balance and to a level of well being that is acceptable to the patient.
A fully function working thyroid would be supporting you daily basis with approximately 100 T4 + 10 T3. T4 is a prohormone and your body needs to be able to convert it into T3 which is the hormone that your body and brain run on, and said to be 3-4 times more powerful than the T4.
Personally, I just think if you have lost your own thyroid production, through surgery or RAI ablation both T3 and T4 should be on the patients prescription for if, and probably when, it will be needed.
Your thyroid hormones, either your own, or those supplemented can be compromised if your ferritin, folate, B12 and vitamin D are not optimal so you need these tested as already detailed.
I have learnt of my own situation back to front, and found the following " bibles " :-
Elaine Moore wrote a book back in the late 1990's Graves Disease A Practical Guide : she found no help nor understanding with her symptoms after having gone through RAI so wrote this book o help others who might be in a similar position
Elaine Moore has become a leading medical researcher into all things Graves for all Graves people and their families.
She now runs a very well respected and researched website in the States and goes into every aspect of this poorly understood and badly treated autoimmune condition. There is an open forum much like this amazing site, where people can read and learn from each other.
Tired Thyroid by Barbara S Lougheed is another book written by a lady with Graves and who had RAI treatment. Amongst other things this lady debunks the TSH blood tests, and now runs a " blog " under, I believe the same title.
Your Thyroid and How To Keep It Healthy is written by a doctor with hypothyroidism. Dr Barry Durrant - Peatfield's book is an easy, sometimes funny read about all things thyroid. We may not now have this amazing little gland but we do need to know what it does so we an try and compensate accordingly.
More recently Professor Toft the eminent endocrinologist wrote a peer reviewed paper:-
Thyroid Hormone Replacement - A Counterblast To Guidelines - which substantiates so much of what we are all " up against " and this just might help you with treatment options, should you have any - it is on this website in full, but sorry, I'm not a cut and paste, sort of a gal !!!!
Thanks to this amazing site and a couple of books, I've turned things around for myself, as I found no help or understanding within the NHS, and referred to as a conundrum by my doctor, whom I am now staying away from, and I am self medicating, buying my own thyroid hormone replacement, and getting my life back.
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