I laughed (out of hysteria) initially, when I looked, last night, at the ‘Success stories’ tab and saw not 1 post?
Then I thought how depressingly sad.
So I decided to post mine. I wrote it out, rambled on, as I do, and hit ‘Post’. Nothing. It just wouldn’t post… in the end I gave up, late at night and needed my bed. I did copy and paste the story first onto another file.
I am so relieved today, to open up this tab, to see, that actually, there are stories here. Phew…that is a relief. It was just a blip somewhere in the systems.
So I shall add mine to the thread:
I'm not self sourcing or self medicating.
I consider myself to be one of the lucky ones, despite my decades of battling HypoT.
The first time I ever heard of HypoT, I was about 19. I had developed a goitre and my GP, admitting he did not know what it was so sent me to a very pompous specialist who dismissed me telling me to come back in a year?? I nearly didn't go, but as it had been inbred into us that Dr, and especially hospital appointments were so precious that I did.
For about two years I was back and forward randomly and intermittently, as they took blood and checked it.
I remember it being very 'daunting' and uncomfortable each time. I had to undress and put on a 'gown' - sit in, what was no more than a cupboard, with a door at each end. The specialist would open the opposite door and he, and his entourage would discuss me - between themselves, ignoring me. I remember their comment being 'there was something', 'there wasn't anything' throughout. Finally I was dismissed with a wave of a hand and the comment - 'don't bother coming back unless your Dr sends you, lack of iodine chaining from a girl into a woman' (condescending.....!)
I did go back to Gp some time later with same issue -goitre, he checked his file and said 'They could make their b****y minds up!' He sent me with a note to get bloods done the following morning whilst goitre present as this had been problem, would appear and disappear randomly, not appearing when bloods being done! But hey ho LGI did not have anyone on a Saturday morning to take blood.
It took me a further 10 years, and a number of other blood tests, to get a diagnosis of HypoT, despite increasing symptoms. That evasive blood test!
I was given...guess what...yep T4! And told I was lucky that it would be all I need.
I then spent 20 years trying to make T4 work.
I actually remember sitting in the surgery reading an article about hypoT, where people were saying how well they felt once given T4, I was there to tell the GP that T4 was not doing anything. Levels had been increased, decreased, several times. He told me T4 might not improve things but should stop them getting worse.
Any further symptoms that developed were assigned to anything but HypoT. Life style was the main 'excuse initially, after all I was a working mum etc...of course I was going to be tired etc. Depression was suggested, I even think they did give me anti D's at one point. I think they were placebo...no effect whatsoever. Anyway, eventually and not that long ago, they said it was my age. I said it wasn't my age 30 years ago!
I would get up, get the kids ready for school, luckily my neighbour would take them for me, and I would collapse on the sofa, at 8-30 in the morning...it was ridiculous. This was not ‘lifestyle tired’ This was chronic fatigue.
Over the years my health deteriorated. Eye problems started around the time of the goitre - dry gritty eyes, developed into conjunctivitis and then ulcers, which reoccur intermittently over the years. Migraines increased in frequency and disabling severity. Chronic fatigue was a nightmare. Fibromyagria was ruling my life. Everything hurt. I could not get warm, I had the myriad of HypoT symptoms.
I’d already found books by the Dr’s Lowe and Broda Barnes, I had read about the work of Dr Skinner and Dr Peatfield and Dr Myhill. I was following the problems they were having. I then found and read Dr P's book and could have cried. The case studies were like reading my life story. My teenage years had been plagued with underlying problems, including fainting fits - usually around a certain time of month. but not always. Sometimes I would not actually black out - I would be sitting with my head on my knees, hands hitting the floor, wide awake but unable to speak or move. I actually fainted on the alter on my wedding day...something that still gets brought up - not sure which one of us is looking for the' get out clause'!
Tonsillitis was another regular occurrence growing up - increasingly at times of stress - like my wedding - another story - comedy of errors! (30 years this year)
Dr P's book made so much sense.
I became more aware of the impact of certain foods and such and started looking to help myself, knowing that Dr's were not.
At this time I was fighting my way through a teaching degree, my dad was also terminally ill, living 140 miles away, so a lot of travelling. I also fought through some other horrendous, long term family stress.
My ability to concentrate was impaired. I was permanently fuzzy headed. My memory was disappearing fast. I started to have panic attacks and would go to pieces and be ill for days if anyone looked sideways at me. I started to suspect my adrenals were being affected.
We went on holiday to a Greek Island, we were assigned a room on the 5th floor. It was night, so dark. I'd just got on and off a plane. Yet as soon as I walked onto the balcony my legs went to jelly and my stomach churned. I told my hubby that we couldn't stay in that room. He thought I was joking. I could not explain it. It was just a totally debilitating feeling, I could barely stand,I felt so weak.
Luckily he realised I meant it and we were moved to the 2nd floor, with a canopy below our balcony, the following day. That first night the door was locked tight and curtains pulled!
I saw my GP and told him that after 20 years of trying to make T4 work and failing it was time I was allowed to try something else. I was told there was nothing. I told him there was t3. He said he couldn't issue it. so I asked to be sent to someone who could.
This idea seemed more palatable to him when he found out I had private cover through Hubby's job. But he sent me to a Haematologist, who made me feel like a couch potato ,and could see nothing wrong with my levels, even though my T4 level was way off the scale.
I went back to GP and told him I wanted to see an endo, his reply this time was that there was not one in the area? I pointed out I could drive and had a car. Why the reluctance??? I never understood this.
He also decided to check my cortisol levels before I went to the Endo. This, I was told, was 'normal, no further action' (Why does this phrase annoy me so?)
The Endo checked my cortisol again as he said 'actually it was borderline'. So he rechecked. This came back ok, so he issued a small amount of T3. This was increased once, and did help, to an extent, for a while. It was swine flu that floored me again. I went downhill fast...it literally felt like the energy was draining from me like water from an open tap. The Endo did not want to alter meds as 'looking at last bloods levels were very low'. Grrh!
He asked me to see a psychologist. I did. This chap agreed with me, medical not mental. TG.
But I'd lost faith in this Endo, and did not go back - perhaps with hindsight now, I should have - I often wonder what his next 'move' would have been.
Instead I booked to see Dr P. That was the best thing I ever did.
I knew I was struggling work wise. I could cope with the 8 -5 in the classroom, and 30 kids, the adrenalin would kick in. But it was the efforts outside this time, the 'spoons' would just run out. Trying to plan, mark assess, research and make resources, and remember what I was to teach the next day, took so much concentrate effort, it wiped me out totally.
Basically life got on top of me. The house was always a mess, Hubby worked long hours and the boys were boys, (still are) my day was just starting when I got in at 6pm...I just couldn't do it all.
Ofsted was looming and I knew I was having panic attacks in observation. I decided to leave, I just could not deal with any more stress and strain. The head persuaded me to go part time instead. But as things happened I decided to leave. I had to get my health back on track. Had I stayed I would have still had to endure observations and I knew I could not get through them at that stage. My nerves were shot. I left to hold onto any chance of being able to work again.
I had at this point booked to see Dr P.
Before I went to see Dr P, I saw our usual osteopath, who had seen us on several occasions for all the aches and pains. Often in shoulders, frozen neck etc…. things I’m only just realising are linking to HypoT. The Osteo suggested my problems may be my secondary nervous system , when I asked her what she meant she said my adrenal system.
When I saw Dr P, everything he said made sense. I did some private testing and it showed the adrenals were struggling and Dr P advised I get them sorted or would not get thyroid sorted. So working with Dr P for some months, I got my adrenals back up and running and gradually built in the thyroid meds and vitamins etc. I did have to restart the regime, a few times, until found the right balance and pace.
Every time I stopped T4 the symptoms of CFS/Fibro/Migraine disappeared, within days. When I introduced the T4 again. they reappeared.
So eventually I ended up on T3 only.
I will add here that I had told my GP that I was going to see Dr P, as all else had failed, and asked him to support me. He did. He allowed me the time and space to work with Dr P. He allowed me to adjust the medications to suit. And prescribed the increase in dosage till I found the right level. So although initially he was not ‘overly’ helpful and forthcoming, he did ‘step up’.
This GP saw the difference T3 made to me. Unfortunately he has since retired!
I started to feel alive, for, possibly the first time in my life, certainly in memory. I could think straight, I was not in pain or tired, the whole world started to look brighter. I could function like a normal human. I had energy!
The only downside was that the weight did not shift. But initially this did not matter I was alive!
I have not, in over 7 years, experienced palpitations or any heart problems on T3? Despite the scaremongering of medics.
About 3-4 years ago I joined Slimming World. I found it so easy. And 11 months later - Christmas, I'd lost 4 stone. I have never felt better.
So, with the correct medication, the right balance we HypoT's can be well again. We can have a life.
Whilst my weight is stable I've got some to lose again. I know why. more recent family bereavement and stress. I know that the knock on effect of low adrenals have impacted on the effectiveness of my medication, and until it is stable there is not too much chance of changing it, but I know I can and I will, when the time is right.
Nothing is perfect. And my adrenals struggle from time to time still, through stress. When this happens it throws the balance of meds out and it can take time to get it right again. But it is no longer the hopelessness of not knowing what is happening or how to fix it. I know better health is possible.
That is why I am passionate about fighting for better diagnosis and improving thyroid treatment for all thyroid conditions. I'm determined to promote the positive effects, of T3 that I have benefited from. And to fight, with all my ability, for choice of medication, to suit the individual, whether that be T4, T3 or NDT.
So please don’t give up. The right balance for each of us is out there. Better health is possible. So let’s fight for it.Let’s do ITT!
Written by
UrsaP
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Hi there! Your story sounds just like mine (and I'm a teacher too!). Please could you tell me who Dr P is? I'm about to try (privately prescribed) T3 and am pinning my hopes on it making me feel better.
Dr P is Dr Barry Durrant-Peatfield. He is the author of this book, which was the first thyroid book I read that really helped me with my understanding of the thyroid, and I would recommend it :
There are lots of entries for his book on Amazon and the prices vary wildly, so check prices for all the entries carefully so that you don't spend more than you have to (if you buy it). The latest edition is the second edition.
humanbean & Dervla123 Dr P can no longer prescribe but is able to advise as to how to treat, with what and with where you can get what you need, all legal!
I have seen him a few times. He tends to treat the whole system, from what I know. He does seem to see very close connections between the thyroid and adrenal. Then they are closely linked. What he says and treats makes good sense. He treated me for Thyroid problems that had been ongoing for so long that it had compromised my adrenals. He is treating my son for adrenal issues which are impacting on the thyroid. I know his advice and help worked for me. And there are signs of improvement with my son.
Thank you for your story, for me, a person still wandering, stuck between worlds, it confirms what I've already knew (and the one thing that kept me going) - the function of a busted thyroid can be reasonably replaced, and life shouldn't necessarily be grim when successfully done.
We do Caesard we also need action. We all need to stand up and be heard. Hard as it is when you are ill and not got the energy to stand. Hopefully those of us who have found some relief from better medication can support those who struggle on.
Thank you UrsaP It's always reassuring to read a story with a happy ending ;)) I'm sorry you've endured so much suffering before before you found the right medication for you! xx
The saddest part is Kitten1978 that my story is all too common, and many have worse tales to tell. Some have not been allowed to find out if T3 works for them.
If I hadn't taken the matters into my own hands and, with the support of HU members and admins, hadn't started to self-medicate with T3-only I wouldn't have been around to tell the tale.
Hi, when you say you 'self-medicated' with T3 - where did you get this from? Can you recommend a reliable source? Many thanks and much love to you for a happy and healthy journey... xxx
How alike we are UrsaP . I had tonsillitis from the age of about 7 at least twice a year with the resultant antibiotics (convinced these are what has mucked my health up). At the age of 10 I had almost fainting fits (puberty?). Once periods started they were regular and reasonably light, but lasting 7 days. My profile tells all where it began to go wrong, but a goitre began to grow just after the birth of my first son in 1968. Needless to say this was not checked up on. Three and a half stone have crept up over the past 37 years since my daughter was born, going up and down at times.
After I had my sub-total thyroidectomy (9/10ths taken away) while 14 weeks pregnant with my daughter, I was put on 25 mcg Levothyrooxine and kept on this until she was 6 weeks old. At my 6 week check-up I was then taken off this and in the November 1978 when she was 5 months old I woke one night to feed her and could not breathe. After steeling myself to go downstairs and phone for a Doctor (my husband was in a state of panic) a Locum came out and gave me a Hydrocortisone injection. I had been under GP for a urine infection (?), but Locum said it was exhaustion (adrenals). Went next morning to GP who then put me on the road of ADs, Valium. Was stuck on these for the next two years feeling worse by the day until such time as I just went 'cold turkey' and stopped them. My reasoning was that they were not making me better, so I could not be any worse without them. Did not know at the time that I should not have done this. It then took about 18 months until I began to feel better, but still had hypo symptoms, aches, pains and constipation being the worse of them with dry skin and dry, gritty eyes as well. All this while trying to look after a baby of a few months and a special needs son only 20 months older than her, whose health also needed a lot of attention, and had just started on Human Growth Hormone injections, given by me. No wonder my adrenals were not good! The worse feeling by being on them was that I could not cry when I felt I needed to. My emotions were just flat. I was not then treated with Levothyroxine until 1997. I then felt very much better within 4 months of beginning this. I do know that Levothyroxine was very much better then than it has been for the past 7 years. I was on Norton to begin with and then changed to Goldshield Eltroxin after 1 week of trying Actavis, which doubled me up in pain. Norton and Goldshield Eltroxin worked well for me.
A week ago I went to a private Endocrinologist, who admitted to me (not on paper though) that CCGs were aware that there were problems with Levothyroxine. So why are they not doing anything about it then! As someone else has said previously, this is tantamount to negligence (or worse), and has been caused by their penny-pinching of budgets. It has not made anything cheaper as we are then subjected to other medication (usually at our own expense, although not always) to try and alleviate problems. All this is very detrimental to our health. Still, it is easy not to really care if it is not their health they are ruining! To say I am angry is an understatement. I have had much correspondence with AMCo, Concordia and local CCG about this problem, which has also affected my special needs son in the same time-scale, beginning at the same time with the same symptoms.
Three years ago I changed GP surgeries and the present one have been very good at doing all they are capable of doing. The principle GP writing a very informative letter to Endo to help in his prescribing. Diagnosis for both my son and me having been made many years ago.
Problems still ongoing and I could go on with this epistle, but will stop here for fear of boring you all. Hugs to all.
nightingale-56 As I said to Kitten1978 our stories are all too alike, the underlying poor understanding and treatment. The willingness to issue AD's and other meds at the drop of a hat, rather than investigate the real cause.
I'm with you in believing that our 'tonsillitis' has some hand in the causes - or is another symptom. My son had 'tonsillitis' 5 yrs ago -he was given various antibiotics - over a period of months, nothing worked. His eczema flared up horrendously, the focus then moved to his skin. Not the underlying cause. HIs dad and I think he had Glandular Fever, but we could not get a positive result. Probably because of the barrage of antibiotics.
We are still fighting for a cause. Dr P thinks it is adrenal, rather than thyroid. I'm convinced he has Hashi's I've been seeing signs for years but could not get a blood to prove it. A few months ago his T4 was raised slightly.
I have just seen a post on FB a lady saying there is a recent theory that Epstine Barr is the cause, trapped in the Thyroid? Have asked her to point me int eh direction of the theory.
Because I have been lucky to find what works for me, most of the time, I feel I need to fight to keep it and I owe it to those, still struggling, to fight for better understanding, diagnosis and treatment for us all. ITT
UrsaP you could be right about the tonsillitis having a hand in the cause. That was the thinking of one of my previous Endos, together with pregnancy, which is enough stress to cause problems. A Paramedic lady who came out to me about four years ago when I could not stop a nosebleed (high blood pressure because of food poisoning) said it was because of The Contraceptive Pill. Now EBV seems to be implicated. I guess it could be any one of these things.
Do hope you get some good answers for your son and he can be put on the right road soon. Yes, ITT for all who need it.
I read somewhere that the reduction of tonsillectomies today compared with the quantities done in the 50's was due to the fact there is a blood supply between the thyroid and the tonsils which is severed when the tonsils are removed. Now I must try and find the source of this info 😴
Hi Marz this is interesting and I'm trying to get my head around the implications of this.
So they are not removing tonsils because of the blood supply - which means the non removal of tonsils may be responsible of the increasing Thyroid problems, maybe? So maybe the antibodies are borne out of he tonsillitis 'bug' 'virus' or whatever it is. I wonder if tonsillitis is a factor. Don't often hear people saying it is something they suffer from.
Let me know if you find the source please should be an interesting read.
Not quite what you were referring to, but possibly relevant to the discussion, from 1922:
THE THYROID GLAND AND DISEASED TONSILS.
SIR,-In reply to the letter of " M.A., M.D." (October 7tlh,
p. 662), I regret the ambiguity to which he has drawn attention.
What I meant to say was that the removal of a focus
of septic absorption such as diseased tonsils must be thought of in relation to possible structural damage already inflicted upon the endocrine system, and, as such, irremediable. I did not intend to suggest that the removal of tonsils qua tonsils had any known relation to endocrine function.-I am, etc,
I'm as much to blame - forget to search! And spend so much time 'responding' to latest stuff forget to look to past posts. So, thanks for the reminder.
I feel like a parrot now and repeating same story, tho I have not told this yet but it's again about YE. (Yersinia enterocolitica)
I had recurrent tonsillitis while I had chronic YE. I was tested several times and only once had streptococci, but because of fever high as 40 and throat swelling so bad I could not talk or swallow, I got antibiotics (I now know I only once seriously needed them because of streptococci).
Later on I found out YE causes recurrent tonsillitis , doctors miss that or are not aware of it.
YE is relatively common in Europe it's connected to thyroid issues and tons loads of people do not even know they had it. I didn't as I had no gastric symptoms except stomach ache and fever which often are mild.
But I had very high antibodies to YE which then turned chronic infection causing recurrent tonsillitis and infection in one joint. Synovial fluid was clear so the bacteria was not in the joint , YE can cause reactive arthritis which passes in a month or two.
So my point is that for example YE can be a culprit but it's not tested if one has no gastric symptoms like bad diarrhoea. Mine was tested because of swollen knee, otherwise it would have not ever even been tested I assume.
So one can have YE and not traditional gastric symptoms nor reactive arthritis. Antibodies usually reduce in 6 to 12 months.
Not YE for all of us but it underline the fact that different types of bacterial infections can cause problems all over your system.
Thanks Justiina for this information. I'd never hear of YE...There is so much to learn. I have had problems with knee swelling before, had injections and osteopath helped. Who knows what some of us have/haven't had and not known.
YE is often ignored even though it can result in multi organ failure and death. For some it causes RA, hepatitis , septicaemia if on iron supplements and for some thyroid failure.
Salmonella and chlamydia can cause joint swelling as well. Not sure is it same chlamydia than that sexually transmitted disease, but hey I have also thought mycobacteria results only in lung infection but mycobacteria can also be sexually transmitted disease apparently causing "vaginal flu" that results in pelvic inflammation and miscarriages.
Everything seems possible to a point I regret reading about these damn bugs.
I am thinking about wearing full size body condom and eat sunshine. Tho that will probably lead to latex allergy and new type of small intestine melanoma.
Justiina you are so knowledgeable and I am so grateful that you share this knowledge with us. Just a pity that you can't get the treatment you need for yourself. Thanks for telling us all this.
I am always amazed how little people know. But that's down to little information available. For example YE is one of those ignored things. I have searched around and so far found one other person in Finland who knows they have had chronic YE and other person is on this forum who has had YE antibodies, he was not aware what it even meant as his doctors did not explain it.
If even doctors are not fully informed how people can be. YE is only noticed if it is food borne outbreak which leads to hospitalization of people.
I consider myself specialist of YE i have searched and read about it a lot.
I had it early 90's, my brother had it as well and doctors said it does not exist in Finland only in Russia. Oh well. We weren't at Russia yet we had it.
Ten years later when GP at work refused to see me as I refused to take ad's I got to see psychiatric who discovered I had chronic YE. She did not have to do any psychiatric evaluation She touched my wrists and said they feel arthritic even though all RA markers have always been negative, xrays shows normal joints as well. She then requested YE antibody test and what do you know, she was right. She referred me to endo, but my GP refused to forward it.
Its freaking hard to find much information of YE, but it has been studied and this is the outcome
I do not blame people for not knowing and I have started to understand how poorly doctors understand this and how YE is barely tested unless its food borne outbreak that needs to be tracked down.
Justiina The problem is becoming more obvious lack of training. GP's just do not look for antibodies for anything, even something as common as Thyroid! You'd think with the common knowledge that 90% of HypoT is caused by Hashi's in UK, antibodies should be the first test, yet dr do not even think of it, and often refuse the idea of it! Surely that is the place to start? So, no it is not surprising that YE is not known about....Who would have heard of it....?
That is why this and other forums/groups are so vital. Sharing information....none of us can possibly get around it all.
It's also about what is trendy in medical community.
Like I have gazillion of RA tests, over and over again even though I basically have had 0 symptoms of RA. Only one swollen joint.
RA was very trendy at one point. And I was interesting case until they finally gave up as RA tests was negative no matter how hard they tried to find it! Then came the happy pill and suddenly generalised anxiety was trending.
I assume hypo is not trendy and got old fashioned after iodine fortifications and they truly believe it's done and dusted for good.
Tho late stage iodine deficiency resulting in full blown hypothyroidism is not the same thing than hashimoto!
Thank goodness for the internet and computers now Justiina . For things like YE we seem to be as knowledgeable as Doctors. I had Shigella Flekneri about 12 years ago. Caught from rice that had been kept warm, but not at the right temperature. Luckily I had just got home from this holiday in Mauritius before the stomach cramps and diarhoea took hold. A sample proved it was SF and one of the warnings was that arthritis could appear or be made worse. I already had OA, which luckily did not get worse. Thank you for giving the links.
nightingale-56 Justiina SF = just something else I've never heard of! You two are making me feel Thick! (Probably with good reason!) Another one for me to look up...
I have 'blown' finger joints and I'm sure I've had RA test too and negative, I'm fairly sure I read somewhere that low cortisol can cause that.... But don't quote me!
You don't sound thick to me UrsaP . I have OA in two finger joints. Once I knew I wasn't going back to work in London, I made a job for myself at home, curtains and soft furnishings, so I think the fingers happened through hand sewing.
I'm not sure nightingale-56 I think my blown fingers started when adrenals really low a few years back, and have been worsening this last 12 months with adrenals low again...?
Marz I understand it the same way as UrsaP , but it does rather sound as though there is a connection. Would be really interested to read more about this. I have not had my tonsils removed, but as I got older the GP thought they had been removed because they were so scarred. Had tonsillitis recently, the first time since 1973. Hope I'm not finishing up as I started with it. Believe I first had it age 4 in 1949 and the not til age 7, but about twice a year from then until I was 28 in 1973.
Yikes nightingale-56 Lets hope it doesn't start again! And agree about the connection... I have asked GP's before if there is a connection, told no. Maybe one day we will know.
There is a theory that certain viruses, including EB, can trigger Hashimoto. One of the endos I spoke to sugggested that I do the tests for the presence of EB and other potential triggers but I sort of don't see the point: they won't give me my thyroid back.
Low level of vit D can be a contributing factor: most of us a deficient in vit D (I was severely deficient) and vit D takes part in directing the immune system towards potential dangers e.g. EB.
Thank you. We are all tougher than we think we are janveron1 I hope my story helps people realise that it is worth the efforts. I just hope we can get the improvement to make sure that others are not struggling for years and decades.
Fantastic post! Makes me feel hopeful, especially after another gruelling night of symptoms...
I am counting the days until my app, early July!!!
When I became v.v. unwell 2.5 years ago, (bed brought downstairs for 2 weeks!!), I knew I had to fight to get well. GP was not helping... I listened to my pharmacist who told me pain relief meds, prescribed for sciatica and 3 prolapse discs, had put my body through a massive assault, especially given that a consultant stopped them abruptly, when I finally collapsed.
Slowly, oh, so slowly, I began to walk, eat etc... many other health issues started.... always, I said to GP, I think my thyroid affected. (I had taken thyroxine 25 years, I was never as well as peers, but managed getting through life..).. GP was very dismissive, even when I cried, asking couldn't I see an endocrinologist, I've never seen one. My throat felt it was being strangled inside, I had pressure on the front of my neck, as well as a multitude of hypothyroidism, then ?swinging to hyperthyroidism, symptoms. All went on deaf ears. Dr knows best!!!
I began helping myself without GP, because by now, my husband of 45 years, told me he would have to leave, he couldn't take anymore!!! Watching my husband feeling so helpless, and looking so worried about me, broke my heart.... (we are still together, since I got support from a London hospital, diagnosed me with sjogrens too, we met other people with sjogrens, at last he understood, not all in my head!). Though, all the time, I maintained my thyroid root cause????!!!!!
Anyway, to help myself, I went to reflexology. My husband drove, I was too unwell, he sat in the car waited for each hour). Reflexologist was very concerned for me, telling me, your body is breaking down.... frightening to hear, but, yes, I felt it too... she loaned me Dr P book.. I read the book within the week! This man, got me!!!! Oh, how I sobbed. I bought my own copy.... sadly, my health got worse, won't go into all that, I'm trying not to cry.... book went away... more consultants, more diagnosis, dermatologist, chemical testing, neurologist, ....., on n on...... I had to dig deeper inside, my body, covered in rash, oozing wound,.... still, I thought, thyroid, ... I couldn't talk to husband as didn't want to burden him. I found HU. OMG! Now, I was amongst friends who understood!!! Now, I wasn't alone!!!
I gained courage, and regained some lost confidence, despite horrendous symptoms, I started getting angry... dermatologist got thyroxine dose altered (causing skin issues!), I had 3 dose changes in months, after being on same dose for years!! When one consultant told me, skin issues psychological, I complained to PALS. Got apology, but more importantly, acknowledgement from the hospital, that his specialty in allergies, did not give him authority on autoimmune disease.
I continued coming to HU, I had no dignity concerns anymore if/when I saw Drs, I no longer needed respect from them. (I felt liberated not caring what they thought about my personality, as I realised that almost every thyroid patient is treated the same. Sad, but true, we are so often perceived bonkers as we seek medical support). I made sure I got regular blood tests after dose changes, and copies of results. I continued learning about the importance of tsh, t4, t3, etc...(.. my GP in 27 years, has only ever slid a piece of paper across the desk, with myxoedema written on it, and prescribed thyroxine!!! Telling me, if I didn't take thyroxine every day, I would die).
Still, I had pressure in my throat. So, still, I searched... then one day, I noted someone posted 're Dr P..... I am not computer savvy, but I thought (logically), if I go to.... and bingo, I did my first PM!!!! I dared to hope, could this be? Could the author still be practicing? Could it be him!!! Could this man, that got me, at first read, be out there???!!!! YES, As so many of you know! And, so many benefited from... the friend who posted keeps in touch, she is healthier than ever..
I requested antibody blood test for thyroid, via a lovely consultant, yes there are many, we have to be selective, I now have copies of my THYROID ANTIBODIES, never been checked 27 years, via GP. I have ultrasound copy of thyroid atrophy, shrivelled fibrous mass, and at last I have my appointment booked with Dr P.
Believing I needed thyroxine dose altered, once I got those results, I saw a new GP, a week last friday. So adamant, was she, that I'm being treated correctly, she kept banging her pen nib onto tsh!!!! Worse, when my husband said he understood what GP was saying, and she got chatty with him, the danger signal went up! (Very unprofessional of Dr, just trained, and I cannot have my husband believe everything Drs say, at my expense, ever again). I walked away.
Monday, rheumatologist told me I am over prescribed, need GP to alter dose!!!!!!!!! Tuesday, my own GP said I would've done same as Friday GP!!!! So, I read out results on phone, plus ultrasound findings, saying, no worries, I'm going private July. Oh, no, I will give you lower dose, prescription here, start tomorrow, by time you see private specialist, the new dose will be in your system..... on collection of prescription, note attached for specialist, showing new dose, New results handwritten!!!! Too little, too late! I've changed pharmacy. I'm in process of changing GP practice.
Thank you, to everyone HU for sharing and caring.
Thank you, UarsP, your story, touched my heart.
I feel that too many GP are working with their heads in policies and procedures, the heart has gone out of the NHS, and there is where the problem lays... it is not all about money!! When I think of the running around, we have done, the appointments, the specialists, the Drs, the nurses, unnecessary procedures, (I think my gynae procedure, thyroid related), hospital beds,........ all because we were not listened to, treated properly at first point of call, GP!
webar4780 Oh my word! I thought I'd been hardened to the inept treatment of thyroid patients but I have to say your story has brought tears to my eyes. And made me realise how much luckier I have been. I thank God for the GP who gave me the space to work with Dr P.
Your story is dreadful.
I too had decades of knowing that family and friends, could not begin to know of the problems we have because of lack of medical knowledge, and competence.
My husband only really realised that this was a 'real' problem, when he came to see Dr P with me 7 years ago. We have been together nearly 40 yrs, married 30 this year. He was there right from the start but never really got it. He has long term problems too, but his are more 'visual'.
We do have to harden up and 'butch up'.
I have to go but I wish you all the very best. Let us all know how you get on.
Sorry had to rush off earlier, son had an appointment.
This is a real battle. And it is time it all stopped and 'they' stopped playing with our lives. The number of lives that have been irreparable damaged as our thyroids have been damaged is scandalous.
We need to be taking things into our own hands and standing up for better health.
I do hope you find your better health soon. Good luck.
As one who's been reading a lot about these damn bugs, that had me LOL-ing, Justiina ! Very interesting thread, with very moving stories. Don't think I'd ever seen your story laid out before nightingale-56 . :(( I hope you will be writing your own 'Success Story' soon. I'm so pleased you are doing well now, UrsaP . It's good of you to share your story, to help inspire others.
Kitten1978 , you say you don't understand the endo's rationale for testing for EBV and other potential triggers because it "won't give me my thyroid back." That may be true, but there's so much current research that points to important connections between infections, gut microbiota, intestinal permeability, etc., and autoimmune disease. So it may well be worth addressing in order to prevent other autoimmune conditions and to strengthen the body generally in order to support endocrine function. At least I hope so.
No problem your rushing off, UrsaP, thank you for replying.
Although it has/is a hard road to wellness, I am much better than I was 2.5 years ago. It is so often said, the really difficult times in life, do teach us a lot.
Well, I've learned a lot about myself, and I've learned a lot about other people.
Good does come from difficulties, if we share, care, talk, write.....
I spend many days raising awareness for Sjogrens syndrome. Through my own endeavours, I managed to get specialist care for Sjogrens. I am very well blessed. I have been given a lot of support with sjogrens, I have made many new friends. I like raising awareness for Sjogrens. I'm sure I will be doing the same for thyroid awareness when I know how to improve my thyroid health.
My feeling is, no person should have to feel alone, unsupported, and isolated, when they are unwell.
Take care, best wishes to you and your dear son. X
webar4780 Thank you. And I do agree that there are positives out of the negatives. I think this move to withdraw T3 can be turned into a positive. It is giving us the opportunity to stand up and make our voices heard. It gives us the opportunity to respond to the 'non-truths'. We can turn it in our favour. I hope!
i'd be interested in knowing more about Sjogrens. I mentioned this at the eye hospital yesterday, as it is something I have 'suspected' on and off over the years. Really dry eyes - started off as itchy eyes, developed into conjunctivitis around the same time goitres appeared - 36 years ago - wouldn't clear and developed into ulcers, in one eye. continues to flare up intermittently over the years. And I get very dry mouth overnight. Sip water throughout the night, but within the half an hour, just as dry!
Eye hospital say it is more likely just from thyroid...get checked. But I'm doubting that. I do have an appointment with Dr next week, and was planning on asking for antibodies test, but if flare up eases off before then, is there much point? If I get a negative they will be unwilling to redo when it flares up again. Like with thyroid, I suspect need to get bloods done when at 'worst'.
If you Google BSSA, (British Sjogrens Syndrome Society), you will find information and a helpline.
The team are fantastic and will help with your query.
If you are ever diagnosed with sjogrens, you may choose to become a member of BSSA. As a member, we are invited to face-to-face group meetings.
There are many group sessions that have speakers on the subject of sjogrens. We also get a quarterly magazine, full of interesting, and important information. We can be also given contact details for making a local friend.
Sjogrens sufferers are really friendly, Therefore, we never feel alone, or isolated. Sharing tips is great for self management, just like HU members do.
Do let us know how you get on at GP visit.
You may, or may not, have sjogrens syndrome. Personally, I now realise I self medicated, for years, drinking 2 litres water plus, daily, and yes, through the night. Also chewed gum....
I use blephasol lotion for eye care. Twice daily. It is great for removing eye make up. (But, as a sjogrens sufferer, and having metal allergies, I do not wear make up now).
I was diagnosed sjogrens, a year ago, after my wonderful dermatologist helped me,
Because my skin was breaking out, she searched for the root cause. As well as checking GP blood test results on computer, telling me I was over prescribed thyroxine, she ran a blood test for me.
I was positive for Sjogrens. She referred me to rheumatologist, who told me, I had tested positive 10 years earlier. I had never been told.
Dermatologist also referred me for chemical testing, whereby I tested positive to metal, nickel, cobalt. She was brilliant in helping me, when I was so poorly. I will never forget how much she cared.
Do consider, with sjogrens and thyroid autoimmunity, the symptoms appear to overlap. It can then be tricky, knowing which, is causing what, symptom! Lol. So, if you think you may have sjogrens, and tests are negative, many symptoms you get, could also be thyroid.
Thanks webar4780 this is interesting and I certainly will look it up. I realise that the symptoms can overlap, that is the problem with so many symptoms - can be different things - that is why Dr's get away with telling us half the things we have through thyroid are not our thyroids!
I think the niggle that it might be Sjogrens is that my eye problems started around the same time and maybe it was that that caused the HypoT. Do not know what antibodies they did back then. 35 yrs ago. Just says positive antibodies on file. But don't think they have been positive since. Maybe just timing?
It is something that 'flares up' too. And think Thyroid meds working better than they were a year ago so not are it is thyroid. Though TSH was raised last bloods. (Usually suppressed)
Dreadful that GP's feel that it is OK not to tell us when something is 'positive' Why do they do that!!!
Anyway, again, many thanks I will look into the BSSA. Will see if can get GP to test for it next week. Will be interesting to see if eyes settle with drops and gel I've got at the moment. Being tested again next week.
My Endo has just reduced my Levo to 150mg and let me introduce 12.5 of T3. Im on my 6day no change yet. Still so tired. Please could you tell me what is the best adrenal test to get privately. I did once do a saliva test a while back. Is there a blood test? Enjoyed reading your story UrsaP, reminds me very much of myself too. I've felt ill for 14 years and now I've perrimenopause mixed in. I can't remember last last time I had a day with no palpitations!!
AngelaC66 Wow that is great that your Endo has let you have T3 so many are now refusing it. And I'm surprised you are being allowed it when you are already having palpitations, as that is the main 'side effect' they mention.
So go careful with it and start slow and low. Watch out for increased palpitations.
If your adrenals are compromised then you may find it difficult to feel better even with T3. I'm not medical but as it was explained to me, low adrenals can slow your metabolism further and impact on your body's ability to uptake and process your meds. If you have low adrenal function, you may need to get this up and running before the medication will have a chance to help you.
I did the saliva test some years ago. There is another test, for life of me I can't remember the name of it... But search on here for 'adrenals' you will probably find someone mentioning it. I had a cortisol blood test from the Dr that was borderline so Endo did this other test, it came out ok. Maybe ask Endo or GP to do cortisol level first?
How many mcgs of t3 were you on when taking t4? And how much/how often did you increase from there? When you lost the weight , you said it was 11 months later? Did it happen gradually? Or very sudden? Thank you!
I'm on t3 only, as naturethroid nearly ruined my life! My dr. Saw that my reverse t3 went way up with naturethroid and still continue to have me take it... She even upped it because my t4 was low, but I hear this happens with T3. I have now since dropped the naturethroid and feel so much better. My doctor is on vacation and doesn't know this, but she seems to listen and allow me to kind of work with her in dosing, etc.
I don't have a lot of weight to lose, but I started gaining weight after pregnancy because of this hypothyroid post pregnancy.. I probably have about 10 to 15 pounds to lose to be my fit self. I hope t3 will help with is, as I'm eating AIP/Gaps and not losing. I'm also having my female hormones tested.. results should be back soon! Did you have yours tested?
I started on T3 in 2007 - and I can't quite remember, Would have started on either 5mcg or 10, and I think it was 10. I was on 175 T4 I think, and that was dropped but couldn't tell you by what. My t3 increased to 20mcg, but endo would not go beyond that as tsh was suppressed. He was not comfortable with that. They knew my adrenals were not working well but ignored that aspect. Now I know that impacts on the ability to process conversion. And on uptake.
It was 2010 I changed to T3 only, with help of Dr P and my GP of the time. He saw it was working, but he retired a couple of years ago.
Took me about two years to get sorted and find the right balance, that makes these 3 month trials a joke!
It was 2014 that I went to SW to try to lose the weight which only started when I went on after starting t4. I started at the end of Jan and by Christmas had lost 4 st. But my meds were balanced and had been for some time. Stress scuppered that. Left me failing again, Which figures as it impacts the adrenals and slows the metabolism further. Impacting on the uptake and processes. Two years on, I'm starting to get 'back there' again. Losing weight but very slow this time but not 100% with meds yet.
I did lose a bit of weight when I first started on a small amount of T3, but only about a st and then plateaued. Never lost any further not matter the dose. I think the weight may be more down to failing adrenals but just a thought.
A lot of people get their actual diagnosis after pregnancy. I did too. Suspect the adrenals just can't cope with the strain of untreated hypo, and the hormones of pregnancy. Or maybe the shock!
If your Dr listens that is good. Hope they continue to support you. At the end of the day no one trained or not can know our bodies better than us. Good luck.
I know it's old post but hope you see this, How are you and how did you support adrenals please, I've not given them enough attention and feel so ill most of the time in levo
Hello. So sorry you are feeling so bad. Im botvmedical can only ho bynmynown experienced and what I have learnt these last few years. Have you checked out your vitamin b12, d ferritin and iron level? These all.need to. be in good shape or can impact. Adrenals are very important too. As closely connected to.and impact on thyroid health and vice versa.
I would not recommend anyone take adrenal supplements without checking the state of their adrenals. The best thing to do is to ask your gp for an endo appointment and see if endo will donate short synachen test.
There are private lab options for getting adrenals tested but I am a bit out of date with which tests are recommended. Mine was some years ago. I'd suggest contact TUK for up to date info on this.
Have you considered that it might be something in the levo not agreeing with you? Some of fillers maybe? Or it might be that you are not converting the t4 as effectively as you should be. This again could be down to low adrenal function or genetics.
Well yes iv done the vits all the time iv seen Dr P who said im adrenal insufficient
So how did you heal yours, yes iv had urine test Nhs which said fine when Dr P said not fine ! and iv had three saliva private testings with low results but high in evening
My saliva test was low at all four points if I recall. I would be inclined to hear Dr P over others, as most don’t accept adrenal issues unless Cushings or Addisons. They say there is AI but not Adrenal Fatigue, because we do not fit the ‘set’. symptoms set. (basically we don’t generally lose weight) But what if it is poor processes of T4 or our Hypo itself, that is altering the symptoms set? Too many of us have experienced the debilitating condition of Adrenal Fatigue for it not to exist. I had started to suspect my adrenals were causing me problems before I saw Dr P, and an osteopath, told me she thought it was my secondary nervous system, when I asked what she meant by that she said my adrenals.
I started taking Nutri Adrenal Extra, (NAX) when that was unavailable for a while I went onto Adrenavive. Back on NAX as tend to think that is better, but just personal opinion.
I wouldn’t say the adrenal issue is healed. I started taking NAX back in 2010. Working with Dr P, built up slowly from one tablet to 4 a day. Took 18-24 months to get balance of meds and supplements and for all to settled down (and on T3 only) After a couple of years started cutting down on NAX, cost of all the supplements and not working. But then when any stress triggers really took it’s toll. I did see Dr P again he reckoned I would likely need to take them indefinitely. I now generally take 2 pd, but if feeling a bit stressed or know there is a lot going to be going on I might up it for a week beforehand.
Major stress will still hit me, hopefully not to the extent it did before.
Yes I feel it's adrenal related, my tsh has hovered between 4 and 5
My t4 always a good way up the range but my ft3 always in lowest quarter, this even after working on optimal vits and healing gut, so I'm sure I'm a bad converter and I don't have the gene as checked it out
I e had drip feed stress for years
I don't k ow if I'm officially Hashimotto ?..........the thyroglobulin antibodies have been over range a couple of times. It all the time. But the peroxidase antibodies are in range and I can't find out which ones denote Hashimotto?
I had antibodies back in 1981ish but don’r know what. I have ‘Acquired HypoT’ noted on my file whatever that means! I had some serious long term stress that seemed to have a very long term detrimental affect. This raised it’s head again 5 years ago. Takes years to settle back down. Adrenals definitely need more investigation. For all our sakes.
Hey UrsaP , great to hear you have had success! May I ask what tests you had done on your adrenals, and also what you did to help them heal? I'd be greatly appreciative!
Hi HypoHden again time has passed but, the GP did a blood test initially, before they sent me to specialist. This I got told was 'normal, no further action' as per. The Endo, when I saw him did say it was actually borderline low. Dr P, when I saw him 3 years later was astounded that an Endo would even admit 'borderline low'. the Endo did the short synacthen test, which he deemed to be ok. I have since heard that the level should double over the 30 mins. Mine went up about a quarter. Endo deemed it ok. Dr P didn't. After I saw Dr P [2010] I had the Saliva test done via Genova, they were the recommended lab at the time. Not sure where would be best now, but would be worth asking where best these days. This showed low adrenals at all four points. And as Dr P says if low at one point, will be low at other points and shouldn't be.
Bear in mind this is from memory, and is 9 + yrs ago. Initially I was on Whatever T4 and 20 mcg T3. Dr P advised that I should stop the T4, continue the T3 and start building up with the adrenal supplement, slowly. starting with one tablet a day, for several weeks and increasing very slowly over a period of months. Gradually added in other vitamins, C, B12, Co Q10. Within a few days of stopping T4 the worst of the symptoms subsided. We did try to add it back in on several occasions but each time the symptoms returned. So instead we built up the t3, again very slowly. As I said it takes a fair time to find the balance and get it to settle. I was lucky my GP at the time was monitoring and supporting me.
Hi it's jeppy again , so basically Dr P said take 0ne Adrenavive 11 early and another before 0ne o'clock if needed
(I tried NAX bit thought at the time I was better with Adrenavive )
So il d this regime again, but I can't ask Dr P sadly
So when you got up to four a day did you take in the morning the same?
I'm in a hellish worrying situation and it's been ongoing a year now and no end in sight and unbelievably I've been lax with it all?
Iv been in a shock state as its huge and not looked after myself as well as I did (when need it more doughhh)
Il get adrenals checked again, saliva test is all I know of
Your post has inspired me
I've even got t3 here in the fruit bowl but not ventured , adrenals first I think
The complication is this bio identical hormone I started two months ago, I know it seems daft, I think I was just so exhausted with being exhausted anxious depressed and broken hearted
It has boosted for sure, but I don't feel well or 'right'
I got it to build bone density back up as it scared me as told I've osteopenia, And the Carol Vaudaman story inspired me as I too, felt like a switch went off, I now think that Carol mustn't have thyroid implications as she was well in a few days ( so envious)
The last two weeks I've got neck pain, and more shoulder pain, the groin pain I've had seven yrs is feeling worse 😘😘😘😘😘😔
And the weight gain is horrid, I've started to feel a bit sorry for self and frustrated and this won't do
How can we tell the NHS their medical failure is so catastrophic
An endo wrote to my practice to say to get my tsh between 0 and 2
Yet when I get my bloods done as yesterday and it's 4.5 it's ok, no action?
I totally understand what you mean. I went back to Dr P, as having undergone two years of high stress again, I too had lost focus and just couldn’t see what I needed to get right. Most annoying is that at the beginning of the two years I was at the best I’d ever been, and that first year, doing Slimming World I lost 4st in 11 months. And found it quite easy.
However, the build up of stress and aggravation of family issues put the mockers on it. And the stress escalated. Dr P jus put me back on the right track and one of them was the need for the adrenal supplements.
Check very carefully before taking either adrenal supplement or T3, especially if you have other issues. I was already on a small amount of t3 so continued that when started with adrenal support. And gradually increased that too. I think I said earlier about trying to reintroduce T4 but each time the worst symptoms reappeared, so eventually gave up and just upped the T3 slowly. Look out for any adverse affects, sometimes it can be a case of just upping things a bit too quickly, so bear that in mind. I had to start again about 3 restarts with Dr P’s regime but worth it in the end. With NAX started with 1 in morning. Then 1 in am one early pm. Then 2 am 1 pm, then 2 each am pm.
Now if I could just avoid any stress all would be great.
Thank you for taking the time to write your account, it was very inspiring. Can I ask- at why levels is T3 usually prescribed? I asked my endo about it once and she said it wasn’t a good idea for me because I am already very anxious.
That is very much a post code lottery I’m afraid, too many variables to be able to answer. Depends on Dr, CCG, etc. Some places are now saying will not issue more than 10mcg p/d. But others take 20mcg alongside T4. Most of us on T3 only are probably on 50 or 60mcg pd. Some are on more.
I think you need to find out why you are so anxious? Is it your adrenals as often related. I was taking adrenal supplements alongside T3 and still do. Dr P said that if adrenals struggling will not be able to get thyroid sorted.
Thank you- I had a feeling it was a bit of a complex question. I actually have thought about adrenal fatigue cones I am sometimes lightheaded. I am going to ask my dr about this.
Most Drs don’t acknowledge adrenal fatigue, and say we don’t have adrenal insufficiency as we are not losing weight and such. but what if, because we are hypo too, that adrenal problems affect us but in slightly different ways. They know adrenal and thyroid related.
Vanderpump dismisses AF because when we are stressed our bodies produce more cortisol. But what if there is something stopping our bodies producing more cortisol when it is needed? With AF it is a case of stress causing us to use cortisol but the cortisol not replenishing as it should. From experience stress can knock me out for ages. The worst stress has taken me c 3 years to recover from.
I hope you have an understanding and forward thinking Dr. Good luck.
This is very similar to how I feel at times. And, just like you, antidepressants/anti anxiety meds are thrown at me. Thank you for this. I will be following up with a doctor willing to test.
I wonder just how many of us have NOT been offered antidepressants. No one should be given AD’s without them having full thyroid panel testing. Give them out like sweets.
Was talking to two ladies from Dublin, about 2 yrs ago, we were at a NICE open meeting (yep apparently NICE reaches Dublin even tho they shouldn’t!) Both ladies had lost children to AD’s was very sad. They were there to see how NICE worked. Think we all know now how NICE work....
I think AF is real. I think Dr P just saying it is AI both the same thing. But Vanderpump and others argue because AF symptoms differ slightly to AI - but as I said maybe because the person has different factors in play.
When my adrenals go down, with major stress, twice now, it has taken me 2-3 years to get back to anywhere near normality. Ok at the minute but could be better. Had a lot on though these last few weeks. Was on holiday which was great but any travelling, organising etc takes it’s toll. Followed by hubby having a knee replacement. Still recovering so bit knackered of late. But ok. Dread to think where I would be right now if not on T3!
It is about finding medication that works for the individual, understanding what is happening when things go out of sync and having management strategies.
My own experience of low adrenal function is that I become very anxious, find it hard to cope with every day stuff, serious fatigue and weakness. Can get through a day, event or whatever, but wiped out for hours/days/weeks and sometimes months after, dependent on level of stress. I also would shake if someone so much as said boo to me, to point I couldn’t sign my name. Insomnia and such also figure.
I was teaching and would get through a term, but holidays I would be like a zombie. I have very limited memories of my boys childhoods. I recall Christmas days struggling to get out of bed, sat on the sofa unable to function on any level.
Occasions sat with head in knees, hands on floor, everyone thinking I’d fainted or fallen asleep, when inside I was wide awake but there was no energy in cells to lift my eyelids, let alone speak to let them know I was awake. V scary.
Of course the thyroid and medication processes are impacted adversely too. It becomes a vicious circle.
I suspect there are many other signs and symptoms, and we may all be affected in different ways, depended on base factors. Knowing what is caused by thyroid dysfunction and what is caused by low adrenals is difficult.
I ve boldered along then get 'sensitised' and feel ill for days then come out of it again, so,etching has to give and it's main,y housework , I get to where I'm meant to be or be lazy omg
You describe this and I completely get it, had it, I've had it it driving and pull into lay-bys to nod off for five
I was TA in high school, my stress was mega and esteem so low. I kept blaming things, situations as has been divorced, betrayed but really the crux was illness. Sadly sisters kept saying pull yourself together as they thought I was being woos
I ended up leaving and I feel desperately sad that I left another good job also because of the anxiety I had. It was like running, running. I was a mess and like this for years and u diagnosed, joint pain so sent on a b pain clinic course for ten sessions
I was getting so vulnerable even my old mum asked where my woomph had gone
So then I got proud and ashamed and always put an act on
And I still do this even for my adult kids as they don't want my problems do they
He said take Adrenavive and Metwvive but I didn't get along well with metwvive then tuk suggested I go the levo route but my adrenals won't allow the levo higher dose
I don’t get on so well with the Metavive either. Tried Nutri thyroid too but don’t particularly notice improvement with that. And wary of long term adverse affects following T4 intake.
I can’t tell you what to do Jeppy, I’m sorry, I’m not a medic. I can only tell you what I did and do that worked for me. But we are all different. Unfortunately, because there is so little understanding and support for us, many are having to go through trial and error. This should really be supervised.
Most of us aim to get our TSH down towards 1, as that is where we tend to feel better, some of us have even lower TSH levels and feel fine. however, it is not all about TSH. it is also very important that your T3 levels are healthy.
Have you tried upping your T4 to get your TSH down, has that worked?
It is about making sure other levels are in order, Vitamins and iron, Cortisol etc. And seeing if your levels improve at this stage. If not other things need to be considered and really you need at this stage to be seeking our a good Endo, preferably one that is not adverse to issuing T3. Some people find they only need a little T3 to get well. Or NDT. Others need T3 only. But as I said we are all different and no doubt have different factors at place impacting on how we process medications so one regime will not suit all.
If you do decide to alter your medication try and get a Dr to at least agree to monitor you. I was lucky, when I worked with Dr P my own GP, having sent me to Endo with no real success, did support and monitor me. Always go steady, slow and low with alterations/additions to meds.
I wonder just what impact of long term use of T4 and such has? I wonder if it is altering our DNA or damaging the enzymes and processes. But research not going to happen in our lifetimes, the way things are.
Well I just hear Dr P saying. "Keep it natural darling "
But the Metwvive didn't seem to cut it
You get to a weary stage I guess where you can't bothered, I'm here now, I've been worse like falling asleep in lay-bys etc and waking up broken hearted for no reason, crying at anyone's sadnesses.
But as I'm not doing that now although still unwell so to speak, in nighty at midday, any get up and go, got up and gone, can't be bothered to wash hair stuff , it's not good at all
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