Thyroid UK
84,272 members99,292 posts

Success Stories - T3 Works

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!

62 Replies
oldestnewest

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.

3 likes
Reply

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 :

amazon.co.uk/Your-Thyroid-K...

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.

4 likes
Reply

Agreed humanbean Dr P's book a great place to start, easily understood.

3 likes
Reply

Dervla123 Be aware that Dr P can no longer prescribe. He mostly concentrates on adrenal problems as far as I know. (I've never met him myself.)

3 likes
Reply

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.

I found seeing him as money well spent.

4 likes
Reply

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 need success stories!

3 likes
Reply

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.

3 likes
Reply

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

2 likes
Reply

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.

4 likes
Reply

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.

The story of Lorraine Cleaver sounds pretty horrendous: hypothyroidmom.com/suicide-...

I wonder how many people end up in a similar situation but they never get diagnosed or they never find out that there is ndt or T3 ;((

6 likes
Reply

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.

xx

14 likes
Reply

j_bee 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

2 likes
Reply

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.

3 likes
Reply

Thanks j_bee

1 like
Reply

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 😴

5 likes
Reply

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.

All the best.

Reply

The way I understood the info was that by removing tonsils you were also dis-connecting a blood supply to the thyroid .....

1 like
Reply

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,

London, W.1, Oct 7th. H. CRICHTON MILLER.

ncbi.nlm.nih.gov/pmc/articl...

4 likes
Reply

Ah I see. Thanks Marz

Reply

healthunlocked.com/search/t...

The above link takes you to previous discussions about tonsils - scroll down for one by greygoose with 41 replies :-)

Reply

Wow what a good article. Thanks for highlighting that Marz and to greygoose for the post. Interesting

Reply

Yes it saddens me that the Forum Search Box is not used more often. A wealth of information 😊

1 like
Reply

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.

1 like
Reply

Just had a google and previous posts from this forum appeared - so pop tonsils into the Search Box 😊

1 like
Reply

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.

6 likes
Reply

Very informative post. Thank you Justiina

1 like
Reply

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.

Reply

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.

2 likes
Reply

Justiina I'm beginning to regret you reading about these damn bugs!!! LOL!

We are all doomed!

Keep it coming, it makes our hypoT seem like nothing!

2 likes
Reply

:D

I agree we are doomed!

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.

4 likes
Reply

Oh my what an image!

Reply

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.

1 like
Reply

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 :D 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 :D 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

ncbi.nlm.nih.gov/pmc/articl...

Still it is ignored!

Recently i found this which i have posted earlier

cell.com/cell-host-microbe/...

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.

1 like
Reply

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.

2 likes
Reply

So true.

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!

Reply

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.

3 likes
Reply

j_bee 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!

1 like
Reply

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.

1 like
Reply

I'm not sure j_bee 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...?

1 like
Reply

Could be UrsaP . The tope of my arms are really bad when my adrenals are low. Plenty of sleep and Vit C, helps me quite a bit.

1 like
Reply

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.

1 like
Reply

Yikes j_bee 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.

Reply

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.

thyroidpharmacist.com/artic...

hypothyroidmom.com/hashimot...

2 likes
Reply

But Kitten1978 if you got the test results it may give these end's a better idea of cause and start them thinking?

Reply

Thinking UrsaP ! Do they get paid for that!

1 like
Reply

Maybe I just wish j_bee

1 like
Reply

It was a private endo and what she was thiking of was how to get money out of my wallet. I didn't have a good feelinkg about her...

1 like
Reply

Thank you or posting this xxxxxxx

1 like
Reply

Thank you for sharing

1 like
Reply

Well done you are tougher than you think you are!

A beacon to all - never give. My full admiraration of you cannot be fully expressed here.

janveron1

1 like
Reply

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.

1 like
Reply

UarsP,

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!

5 likes
Reply

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.

3 likes
Reply

webar4780

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.

Reply

"I regret reading about these damn bugs!"

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 j_bee. :(( 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. :)

3 likes
Reply

Maybe you are right. I need to read more about it.

Reply

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

2 likes
Reply

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'.

1 like
Reply

UrsaP,

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.

The joys of autoimmune disease!

Take care.

1 like
Reply

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.

1 like
Reply

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!!

2 likes
Reply

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?

Best of luck.

1 like
Reply

You may also like...