I was diagnosed with autoimmune Grave's disease in 2010! I was severely unwell. I tried medication for 2 years but my thyroid just wouldn't behave... eventually I had a very large dose RAI in 2012... I am left with secondary hypothyroidism and this is just as bad 😪 I am not well.. I take Levothyroxine 200mcg OD at present but my blood results don't correlate.. My Endo, is constantly raising and decreasing the dose but it never becomes stable... I have numerous health issues and my health is deteriorating rapidly... 😭 to be honest, I am giving up... I am 48 years of age, I had been healthy before 2009, when I suddenly became very unwell! The last 3 years, my cognitive and neurological health has declined rapidly.. I had a photographic memory, I have a degree in health and I was very knowledgable. I could recall dates, times, names etc from 25 years ago.... I would remember friends and family birthdays, their middle names, the last time we spoke and even what they were wearing! I had alot of medical knowledge in addition to my degree. I have always loved reading and researching. If something came up I didn't know about, I would research and gain more knowledge..
So the last 3 years have been scary, very scary!!
The last 12 months it has become very noticble by my husband and family..
I am losing it! All my knowledge! All my memories!
I struggle with memory, long and short term.
I can't remember names or dates.
I forget words and forget what I was saying mid-sentence. Especially if someone interupts me.
Forgetting words to songs I have listened to all my life!
My spelling is terrible... I have to check the spelling of words I used to know.. I hate bad grammer and spelling but when I have written something, either a text or email, I proof read and certain words are missing and the spelling is bad.
I can't concerntrate on anything... I have started to listen to books after trying to read a book about a year ago, and I was reading the same sentence over and over and it still wasn't going in.
I had a memory test with the practice nurse and my results were bad.
So.. I really would love some help and advice please 😞 I want to know if this is due to my thyroid disease or something else entirely? I'm looking for research or study's, or anything that may help! I am totally desperate...
Thank you for reading..
Here's some of my results... I do have bloods dated back to 2010.
-------------------------------------
19th Jan 2017
TSH 0.01 0.35 - 4.94
T4 22 9 - 20
--------‐--------‐‐-----------------
20th March 2017
B12 402 187 - 883
Folic Acid 2 3.1 - 20
Vit D 46.6 60 - 80 (125)
ESR 17 0 - 29
------------------------------------------
18th April 2017
TSH 0.01 0.35 - 4.94
T4 16 9 - 20
T3 6.2 2.4 - 5.7
Cortisol 193 101 - 536
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13th July 2017
TSH. 0.01 0.35 - 4.94
T4. 11 9 - 20
T3. 5.6. 2.4 - 5.7
---------------‐----------------------
6th Oct 2017
TSH 0.01
T4 10
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9th Oct 2017
TSH 0.01 0.35 - 4.94
T4 10 9 -20
T3 4.4 2.4 - 5.7
--------------------------------------
20th March 2018
TSH 19.11
T4 /
T3/
---------------------------------------
16th August 2018
TSH 7.98 0.35 - 4.94
T4 15 9 - 20
---------------------------------------
11th December 2018
TSH 9.84 0.35 - 4.94
T4 12 9 - 20
---------------------------------------
18th April 2019
TSH 7.64 0.35 - 4.94
T4 12 9 - 20
---------------------------------------
1st Aug 2019
TSH 0.25 0.35 - 4.94
T4 16 9 - 20
T3 3.9 2.4 - 5.7
--------------------------------------
22nd October 2019
TSH 1.38
T4 15
T3 3.2
------------------------------------
27th February 2020
TSH 0.3 0.35 - 4.94
T4 15 9 - 20
Can I also add, being medical, I have always been involved with my treatment and disease. I have so much knowledge about my disease and other thyroid disease. I am under the care of a consultant endocrinologist but my health is getting worse. I have had all the blood tests, antibodies, vit D3, cortisone eyc... I dont have hashi's. I have tried and followed every single treatment plan but I never get any better.... In 2014, I was as close to being well as I have in 10 years... but it lasted a year approx then my bloods went all over the place and my symptoms returned with a vengence. I get symptoms of Hyper and Hypo and my symptoms are extreme!
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Lisajane7
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The first place to start is with your test results. This will tell us if the dose of Levo you are on is doing it's job. It sounds as though it may not be. Ask at your surgery's reception desk for a print out of your results. For a full picture we need to see:
TSH
FT4
FT3
Thyroid antibodies - TPO and Tg - this is because if your endo is constantly raising and decreasing your dose of Levo then possibly your levels are fluctuating due to Hashimoto's, it's possible to have Hashi's and Graves. It's probably unlikely but worth testing just to simply rule it out.
Also, because we need optimal nutrient levels for thyroid hormone to work properly and good conversion of T4 (the inactive hormone) to T3 (the active hormone which every cell in our bodies need) then the following are also essential:
Vit D
B12
Folate
Ferritin
If you post your results, with their reference ranges, we can take it from there. If your GP can't or wont do all those tests, we have recommended private labs which do all of them in one bundle, hundreds of us here have to do this so please ask if you want details.
**
Also, to compare results (and therefore not change dose due to inaccurate results), it's necessary to do the tests under the same conditions every time. We always advise, for thyroid tests:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, [if taking NDT or T3 then last dose should be 8-12 hours before blood draw.] Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
**
Also, do you always take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Any other medication and supplements should be taken 2 hours away from Levo, some need 4 hours.
I am with Graves Disease diagnosed 2003 and treated with RAI thyroid ablation in 2005, and my health seriously declined about eight years after this treatment.
There's nothing to apologise for, write whatever you like, and there's an edit button here, which I'm always using, sometimes several times just in the one post, don't worry, just know that you too can turn things around, as I have had to do, as have many others on this forum.
To receive detailed advice you will need to post some thyroid blood test results and we need these to be a full thyroid panel to include TSH, T3,T4, antibodies and folate, ferritin, B12 and vitamin D results along with the relevant ranges.
If your doctor will not run these, you can use private blood testing companies as detailed on the Thyroid uk website, and a nurse can even visit you at home, should you wish.
Your symptoms do not surprise me and many on here will recognise themselves in your writing.
Apart from the Thyroid uk website you might like to take a look at the Elaine Moore Graves Disease Foundation website in the States. - This lady has the disease and after RAI found no help nor understanding with her symptoms, so, being a medical researcher she started working on her own thyroid journey and ultimately wrote a book Graves Disease - A Practical Guide ; to help others, and now actively runs a very well respected website with an open forum much like this amazing platform, where forum members help each other.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 - Levothyroxine, plus 10 T3 - Liothyronine.
Some people can get by on T4 alone, some people stop converting the T4 into T3 at some point time, and some people simply needs both these vital hormones, dosed and monitored independently to bring theses essential hormones into balance and to a level of well being acceptable to the patient.
The body runs on T3 - the active hormone and is said to be about 4 times more powerful than T4. Your body needs to be able to convert the T4 into the T3 - and this can be compromised if your vitamins and minerals are not optimal and that doesn't mean just anywhere in the ranges, but higher than what your doctor may think necessary.
The thyroid is a major gland responsible for full body synchronisation your mental, physical, psychological, emotional and spiritual wellbeing, your inner central heating system and your metabolism.
The brain needs a large proportion of T3 for cognitive functions and I was reduced to writing out flash cards to take with me to the doctors, so to remember what to say, and had been reduced from a vibrant, witty, somewhat funny person to someone unable to string a sentence together let alone reply to questions with more then a few words.
Your Thyroid and How To Keep It Healthy is written by a doctor who has hypothyroidism. Barry Durrant - Peatfield writes in an easy to understand sometimes insightful way, and his book explains all we need to know about the thyroid, and what we now need to do to make up for its loss.
There is much to read, reread and understand, and you can also learn a lot, reading other people's post on here, and the answers they receive.
You've made the first step, well done, get some bloods organised, and people better able than me, will talk you through your next steps back to better health.
We need to see your thyroid levels to be able to assist, but I assure you many here have experienced what you are going through, albeit to a lesser extent perhaps.
And yes, cognitive problems are thyroid related. I had a really spotty memory and my gears certainly weren't turning properly when I was on levothyroxine only. I would go blank on words and names and such. I was slow and my sense of humour was almost non-existent and I was isolating myself socially, because I was kind of ashamed of my decline.
Now that I'm on combination therapy of t4+t3 it's apparent that when I'm optimal my brain certainly works much better, but if I'm over- or undermedicated I still slip back to my hypothyroid self. But now I'm not as depressed or anxious about a bad day on and off, since I have a path out of this predicament.
So hang on in there, because there is hope. It might be a slog if you have hard time finding a knowledgeable and level-headed doctor to listen and treat you, but there is hope.
When people suffer from Graves' Disease or some other form of hyperthyroidism or overactive thyroid their thyroid hormone levels become very high and their TSH becomes very low. If people have high thyroid hormone levels and low TSH for a long time without treatment TSH may become permanently low. It may take years for TSH to return to be within the reference range or alternatively might never get that high again.
The causes of overactive thyroid are listed here :
My Endo, is constantly raising and decreasing the dose but it never becomes stable
What is your Endo using to guide your dosing? Is it TSH only? TSH is a pituitary hormone, not a thyroid hormone, and TSH by itself has no impact on your symptoms. It is the levels of Free T4 and Free T3 that affect how well you feel. Are your Free T4 and Free T3 tested regularly? If your Endo is trying to force your TSH to rise by restricting your levels of thyroid hormone replacement then you are never going to get well. Your doctor should be ignoring your TSH and treating you according to your level of Free T4 and Free T3. And Free T3 is the most important of all - it is the active thyroid hormone that determines your symptoms, whether you are hyperthyroid or hypothyroid.
I would suggest that you either find a different Endo - because the one you are seeing is not getting you well - or start managing your own thyroid treatment, which is scary but possible if you buy your thyroid hormones online.
One effect of having low levels of thyroid hormone is to reduce stomach acid. When stomach acid is low the nutrients in food are harder for the body to extract, and as a result mineral and vitamin deficiencies are common. You should get the following nutrient levels tested at a minimum. Post the results and reference ranges in a new post and ask for feedback :
vitamin B12
folate
vitamin D
serum iron
ferritin
Optimising these levels will improve how you feel. Just being in range is not good enough.
As a result of poor thyroid treatment, and if you have low nutrient levels, your cortisol levels may have become deranged as well. To some extent cortisol may fix itself if you get your thyroid and nutrients optimised, but in some cases the adrenal glands (which produce cortisol) need special attention after the thyroid and nutrient are optimised. But don't worry about it for now.
Another thing that seems to be common in people with thyroid problems is that so many of us have poor diets. We've all been told that we are to blame for being fat and so many of us restrict calories as a response. But starvation diets are very bad for the thyroid and you might feel better if you actually ate more fat and protein and ate less carbs and sugar. Because of the issue of low stomach acid you may need supplements to help you digest your food more effectively.
Throughout 2018 and up to April 2019 you had a high TSH with FT4 varying between 27-54% through it's range, following suppressed TSH and fluctuating FT4 levels all throughout 2017. You are now back to a low TSH with FT4 54% through range. Your FT4 is currently too low and I expect your FT3 is as well.
I get symptoms of Hyper and Hypo and my symptoms are extreme!
You say you don't have Hashi's but having symptoms of both hyper and hypo suggest that you might, and you can have Hashi's without antibodies being raised, although I don't know if it's possible to have Hashi's after RAI, assuming the thyroid was totally destroyed.
I'm not au fait with blood cortisol tests but your April 2017 result would seem low, others may comment on that.
In March 2017 all these were low:
B12 402 187 - 883 - if this is pg/ml or ng/L then it's recommended to be at least 550, preferably nearer 900.
Folic Acid 2 3.1 - 20 - this was folate deficiency - was anything done about this by your GP?
Vit D 46.6 60 - 80 (125)- what is the unit of measurement? If nmol/L then it's recommended to be 100-150, if ng/ml then it's recommended to be 40-60.
I don't think you should pay any attention to the TSH results - and if your specialist is concerned about a TSH s/he will be not doing you any favours, and suggest you find someother thyroid specialist ideally from the list held ay head office by Thyroid uk.
You do not have a thyroid, your feedback loop is broken, and your TSH is of no value.
Graves is diagnosed by TSI/TRab antibodies that are known to ' sit on ' and control a TSH reading and this results in unreliable TSH results, and you must therefore be dosed and monitored on T3 and T4 readings, with the intention of bringing both T3 and T4 into the upper quadrants of their relevant ranges, and thereby giving you a balanced and consistent level of wellness.
This may need to happen by your taking both T3 and T4 and I would suggest you ask your specialist to consider a trial of T3 along with a lower dose of T4.
You maybe taking 200 T4 but it seems as though you are not converting the T4 into T3, and too much T4 brings it's own set of problems.
Your vitamins and minerals need to be tested as no thyroid hormone replacement works effectively if these are not optimal, and RAI is known to ' trash ' vitamins and minerals.
RAI is a slow burn throughout the body, as is known to be taken up by other glands and organs within the body, especially the adrenals. In the short term these small glands will have ' picked up some of the slack ' but there's a very good chance you may now need to support these glands too, as you regenerate your body after ingesting the RAI .
It will be much easier for people on here to see current thyroid blood test results along with the vitamins and minerals as previously suggested.
I wasn't able to find any help with any of my health issues after RAI, and I managed to turn things around for myself. You can read of my journey, and all my ' rants ' on my profile page.
I agree with everything you're saying... but the NHS docs dont listen! They wont prx me with T3 and I am not in a position to treat/manage myself! We are unable to buy replacement hormones legally...
Stay where you are with an endocrinologists who isn't medicating you properly as you are not getting better but worse, but, yes, I agree, following the NHS guidelines :
Contact Thyroid uk and possibly pay privately to see an ' friendly ' endocrinologists who will prescribe T3 and T4, balance you out back to a level of wellness acceptable to you :
Or you can do it for yourself as I and many other disillusioned, disappointed and upset and angry people on this forum have had to do :
There is a lot a read and reread and I know when so unwell and with low cognitive function it is a massive challenge, but it can be done. The Admins on this site are amazing, there is support, with many books now with pencil markings underlining all I needed to remember, and then I'd write it out, like ' lines ' at school, hundreds of time, to try and get it to stay in my memory. My challenge may have been doubly hard as I am dyslexic.
I parted ways with my doctor and endocrinologist after being refused a trial of T3 in early 2018 : Having had 3 separate letters ignored over a 6 month period, and being told I was in a ' special file ' by the endo's secretary, and promised that somebody would be getting back to me, I waited a further 3 months and though eventually on first name terms with the endo's secretary I could sense her embarrassment and I eventually gave up the chase and the unanswered letters and telephone messages, as the stress alone was killing me :
I wrote to both my doctor and the endocrinologist and in early 2019 wrote my final letter advising both parties that I had decided to give myself a trial of T3 and that I would be self medicating. I suggested that I would make myself available for the yearly thyroid check up providing a T3 and T4 were tested, I received no answers nor acknowledgement, and trust this final letter went on my file as per everything else that happened to me throughout this whole shambles of a situation.
I am now self medicating with full spectrum thyroid hormone replacement.
T3 worked, and that is where I started getting my life back - I know it goes against the grain, and none of us expected to become our own doctors, but what option do you have, here's me at almost 73 being my own dyslexic doctor - you can't make this up, can you ?
It is not illegal to buy NDT on line I have and others have as well. Mine came from Thailand and it came through customs ok because it is a natural supplement. It took about 9 days and my postman delivered it to my door. I had no choice because my GP would not give me a prescription for Levothyroxine even though i had taken it before. Unfortunately NHS guideline are to go by the TSH which does not give a good idea of how your thyroid is functioning. My TSH was 0.80 and I felt dreadful now it is 0.38 and my T4 is 22 and I feel ok. I do have some palpitations but I breathe through them.
My endo goes by the TSH levels and my other bloods are within the normal ranges according to the gp and NHS guidelines..
My TSH is always suppressed even when I am undermedicated. I have changed Endo doctors numerous times as none of them listens or is willing to treat the symptoms not the blood results...
I have always felt better with my FT4 on the top end of normal.. but as soon as I get it higher, they reduce my levothyroxine...
This disease has robbed me of my whole life!!! My career, my health, my mobility, my sanity, my friends, some family, my independance!!
My Mom is healthier than me in her late 60's..
The way things are going I will be lucky to get 10 more years... and I have 4 adult kids and none are married or got kids yet....
I really hope I get this virus and it will put me out of my misery!!
I'm not living.... I'm dying a very slow and miserable death! 😭😭😭😭😭😭
My endo goes by the TSH levels and my other bloods are within the normal ranges according to the gp and NHS guidelines..
Then it is your endo keeping you sick! Dosing by the TSH is very, very wrong, and the best way to keep a patient in poor health. I understand that you haven't been able to find a better one, none of them are much good or have any understanding of thyroid. Therefore, I'm pretty certain that the only way to regain your health is to self-treat. That may sound daunting, but many, many of us on here do it, for the same reasons as you.
The best way to start is to get private testing, as SeasideSusie suggests. That way, you'll get the whole picture and know where to begin. Although, it's pretty obvious that the first step, right away, should be an increase in levo.
I have always felt better with my FT4 on the top end of normal.. but as soon as I get it higher, they reduce my levothyroxine...
That's normal, because the higher your FT4, the higher your FT3 will be. But, as your doctors are only looking at your TSH - probably haven't a clue about T4 or T3! - they will reduce your dose because a decent dose of levo will have reduced your TSH. That's perfectly normal, and nothing to worry about. But, they don't know that.
So, if you get the testing, and decide to go it alone - frankly, I think that's the only solution, and let's face it, you couldn't do a worse job than your doctors have! - then, post the results and ranges on here, then we'll be able to guide you.
Vitamin levels need testing at least annually, ideally twice yearly and majority of us need to supplement virtually continuously to maintain optimal vitamin levels
Vitamin levels need to be optimal BEFORE trying T3
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 dose of Levothyroxine 24 hours prior to blood 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
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
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Come back with new post once you get new vitamin results and members can advise on what supplements are needed
Also look at trying strictly gluten free diet- you may be astonished at the improvement
Gluten free diet helps or is essential for thousands of Graves’ disease or Hashimoto’s patients
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten intolerance. Second most common is lactose intolerance
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
Getting all four vitamins optimal and on strictly gluten free diet...retesting thyroid levels ...if Ft3 remains low ....then it’s time to see an endocrinologist who will prescribe T3
'I have always felt better with my T4 at the top end of normal'. This should give you hope that for you, you can probably convert Levo sufficiently well enough. Some of us cannot even do that. The problem you have is that your Endo didn't listen and overruled your empirical observations that made you feel better so they must be a complete narcissist / jobsworth / idiot. I think you have grounds for complaint here or at least for asking for someone else / second opinion.
In the meantime it may be worth looking at Dr Sarah Myhill's suggestions from her website. You can legitimately purchase adrenal and thyroid support from her website (and others) which may give you the boost you need. Also, get a cheap vitamin D test done asap... I suspect vitamin D is very important to combat respiratory illness. Taking Magnesium with Vitamin D is essential to its absorption and is a natural anti inflammatory and can even improve cognition due to its stress relieving properties.
Just going by my own experience if you are prone to hyper swings (suggesting Hashi's) you must have antibody tests done. Going gluten free and taking selenium should help counter these.
Another key point (from my son who used to have attention/ cognitive fatigue issues) is to take a cognitive support supplement like Neurobalance by Igennus which has Magnesium, Zinc and P5P in it. Call Igennus up for advice.... they also do a very well regarded B Complex. (These same nutrients support the adrenals, so that's quite interesting how it's all linked.)
Finally, as you are in dire need of better B12 and folate* levels you should address these immediately and follow the advice given by the admin team on here.
*When it comes to folate I would advise against the standard folic acid as this cheaper form has been artificially made to not break down as easily in storage which also means it's harder for us to chemically break it down in our guts and use. The natural forms of folate are folinic acid and methylfolate. Dr Ben Lynch talks about folate absorption issues at length on various blogs/ vlogs.
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