Devasting appointment with my private endocrino... - Thyroid UK

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Devasting appointment with my private endocrinologist who will no longer support me.

NWA6 profile image

I'll give a little background for those that don't know me. I've been an active member for a couple of years on this forum.

I was diagnosed with Hashimotos in 2008. 10yrs on Levothyroxine alone, but never quite became fully well. 5yrs of full thyroid tests showed that I do not convert Levo to T3 very well, my T3 levels always sat at 3.1 (3.1 - 6.8), so 0% through range, no matter what my FT4 level was and if my FT4 was lower in range 12 (12-22) then my FT3 would fall below range. I also had the DIO2 test which was Heterozygous

My TSH has never been extraordinarily high, I was symptomatic at 2.5, I was on my knees, crawling through sludge at 6.5, and finally diagnosed when it reached 10. I've only ever had one episode of my TSH reaching 14.

June 2019, I saw a private endo, recommneded from the lovely forum members and I thought he was going to be my saviour. He saw instantly from my results that I would benefit from adding T3. I was started on 15mcg (3 x 5mcg per day). My life was turned around, I got my life back, no more laying on the sofa, feeling that I was walking through a dream. After 6wks, the very few symptoms I did still have went when I increased to 20mcg per day. I took 10 in the morning,10 at night. I felt perfectly balanced. My heart rate rose from 45 - 55 beats to 68 - 75 beats pm.

For 2yrs life has been amazing, I continued to raise my 4 teenagers, went to college and started work.

Then at Christmas 2020, this Endo decided that my FT4 was too high and he felt I should reduce. I said I felt fine, but I would experiment. That didn't go very well and I found myself with hypo symptoms again. So I raised it back up to the original dose of 135mcg per day, with which I felt optimal. Then Aug 2021, I had covid, my worst symptom was lethargy, I had a week of wellness and then I had another virus which again floored me and I felt heavy and lethargic. So all in all I was ill for the whole of August. In Sept I was virus free but still feeling hypo symptoms. GP's were talking about long Covid, I said, nonsense, I bet this is thyroid. So I got my blood tests in Sept and the results were

TSH - 0.01 (0.27 - 4.2

Ft3 - 5.03 (3.1 - 6.8) 52% through range

Ft4 - 18 (12 -22) 60% through range

So I increased my t3 by 5mcg. So now I'm on 25mcg T3 and my Levo remains at 135mcg per day.

So now this endo says that he will not condone an increase because I am going to do permanent damage, down the line, I'm going to have heart issues and osteoporosis.

I asked why he thought that because my FT3 is only at 50%through range and so I am able to tolerate an increase and that since I've increased all the hypo symptoms that I had are gone. His reply is that because my TSH is suppressed I will have these problems.

He then said that he would quite happily refer me to another Endo because we're not going to agree on this but he cannot prescribe me any more T3 because he fears that it will do me harm and then referred to the hypocrite oath. (just found this typo but it seems quite apt, so I'll leave it in! lol)

So, I've been dropped for disagreeing and also asking for him to provide me with the evidence that a low TSH causes heart damage and osteoporosis. He said the evidence is out there.

My sister had Graves, I know what damage high FT3 can do, my mum is hypo, my Dad has low FT3, my dad has dementia- they call it Alzehemers but after 15yrs, we're only now seeing real problems with short term memory, ( I think its the low FT3) my Nan had hypo and died at 65yrs, I believe from under medication.

I'm so incredibly angry, someone who I thought I could trust, someone who I believe helped me turn my life around is now saying I'm over medicated and he will no longer prescribe! So in 2mths time, I will run out of T3 and my life will, once again, be over. How can these so called experts do this to us? When will it change? I hate them, I hate them all!

135 Replies

I really feel for you NWA6. Some endos are more enlightened & informed than others. It is certainly not a level playing field out there. Please don’t give up the fight to find a supportive endo.

Very best wishes to you 🦋

New2thyroid profile image
New2thyroid in reply to Buddy195

Would be grateful if you could also please share the details of the endo via private message as I have had exactly the same experience.

RachelP03 profile image
RachelP03 in reply to Buddy195

I’d be grateful for the name too, not only for me, but for my Mother. Thank you.

Me too if you are able, so I know who to avoid, am planning to find an endo soon.... thank you

I’m sorry NWA6. I’m sorry that yet another doctor has let down yet another thyroid sufferer. I totally understand your anger but I have to say that whilst I totally get it, I’ve been there so many times, it does no good. Your the one that’s angry and the one that’s suffering. He went home for his tea and doesn’t give it a second thought.

So ask yourself if you want to allow him this win? Or do you want to bypass the lot of them and self treat? It honestly isn’t as scary or difficult as you think. You e done the hard part and know more than him anyway!!

You have a double whammy with thyroid and then covid. Must be very hard and just add to your frustration and I sympathise completely. You’re family history is shocking too! Even more reason to wave goodbye to the so called physicians.

I self treat now (tomorrow I have an endo appt and it’s not going to go well lol - mainly because I’m going to ask what the point of him is. He’s of no use to me or anyone with a thyroid issue so I am going to suggest that ‘endocrinology’ misdescribes the department as it assumes it’s all encompassing which it clearly isn’t). If you want any pointers PM me. I can only reiterate what I have said before and that is I will never go back to stressing and getting angry at the doctors. Self medicating means you control your health. You think it’s tricky but believe me, it’s a whole lot easier, less stressful than dealing with doctors and not as costly as you may think.

NWA6 profile image
NWA6 in reply to Yeswithasmile

I have no problem self medicating. I’d love nothing more than to never have anything more to do with another medical professional. When I had my first child, I stayed in hospital for no more than 4hrs after birth before telling them I was leaving. Same with my 2nd and then with my next two, I had homebirths and dictated exactly how it would go. I hate, with a capital H, the medical professionals. I hate their lack of compassion, I hate their egos and how easily they are bruised, I hate that they feel like they are the expert of my body and mind. I hate that have this elevated sense of self. Grrrr

Excuse me, I’m soo so angry at this point. I am not directing this outpouring of hate at you. I am ready and willing for any and all support you have to offer to self medicate. I am very knowledgable, I just want my hormone replacement to be reliable. I have, once tried to get T3 , it came from Bulgaria and it most definitely was not T3. So that’s what I’m nervous about. I’ve been on Thybon Henning all this time and it’s beautiful stuff.

If you don’t mind me Pm’ing you, I’ll happily take all the advise you have to give 🤗🤗🤗

Yeswithasmile profile image
Yeswithasmile in reply to NWA6

Oh I didn’t take it personally! I was loving how you articulated your intense dislike and feeling that we have this is common!! You are spot on.

PM me anytime. Always happy to help where I can.

JAmanda profile image
JAmanda in reply to NWA6

That’s interesting. I get T3 from Bulgaria - UniPharma (12.5 per day) it seems ok but I’m mainly take nhs Mercury Pharma (20). Do you think Thybon Henning is totally different? I see people posting for suppliers of that.

helvella profile image
helvellaAdministrator in reply to JAmanda

Technically, Thybon Henning is different. It is Liothyronine hydrochloride whereas all other products are Liothyronine sodium.

What is impossible for us to know is whether any differences reported are due to that or other aspects like what they use as excipients. It shouldn't make much, if any, difference but we all know how sensitive we can be to tiny differences in thyroid hormone medicines.

JAmanda profile image
JAmanda in reply to helvella

Oh that’s interesting. Thanks.

Gingernut44 profile image
Gingernut44 in reply to JAmanda

I have to agree with Helvella on that. I had an allergic reaction to Thybon Henning which was listed as such so I can’t be the only one 🤔

islandlass profile image
islandlass in reply to JAmanda

Please JAmanda could you PM me with your source in Bulgaria and how you access and pay - would be most grateful. Thank you

Bluespots profile image
Bluespots in reply to NWA6

Personally, I think on this site, it is good to get your frustrations out of your system, as we all understand the situation. We are all in a similar boat.

LindaC profile image
LindaC in reply to NWA6

Understand entirely. As for hatred... I wouldn't give them the satisfaction. I Hate no one [that's who I am = me as a human], but I certainly Loathe those 'up their a**', medics who seem to have little clue as to what they're doing. The old Trades Description Act seems way too good for some of them! :-(

Please do what you need to do for yourself - there are great people on here to help. xox Such a damning indictment of thyroid care... presided over by a few! 👀🤡👺👹

NWA6 profile image
NWA6 in reply to LindaC

I think that just sounds like semantics re: wording, hate versus loath. They both mean 'an intense dislike'However, I thank you for your support and response 🤗

LindaC profile image
LindaC in reply to NWA6

Indeed and point taken - semantics for sure! :-) "Let no man pull you low enough to hate him." I see 'hate' as kind of the opposite of love, whereas loathing as being beneath my contempt. Oh you have my support - one hundred-fold - re these misogynists! Take care x

The Ducking Stool is no longer overt yet remains!
NWA6 profile image
NWA6 in reply to LindaC

😂absolutely!

Sorry to hear that but you may be able to get a private GP appt using an online GP company (there are loads), they will be able to prescribe you T3 using your previous clinical letters from Endo.

Even your own NHS GP might prescribe for you on a private script if you pay £20-£30 which might be easier. Just take your clinical letters and claim you can’t afford to see the Endo anymore.

DM me if you need further advice as I’m not sure I can mention companies’ names for the doctor services.

Would love to know the name of your Endo though I have an inkling of who it might be if it’s London based. Again you can DM me the name as cannot discuss here even though we really should be able to name and shame the incompetent charlatans out there

NWA6 profile image
NWA6 in reply to Wired123

Thank you for offering this alternative. My GP’s and I have a very difficult relationship. I think they’re wankers and they think I have bi-polar!! Lol

I would love to pm you to glean any knowledge that you can pass on. Thank you so much for offering, you’re a star 🤗🤗

Wired123 profile image
Wired123 in reply to NWA6

Find a new NHS GP

Simples

NWA6 profile image
NWA6 in reply to Wired123

😂😂😂 simples, what planet are you on? I’ve been through 5 at my own surgery, I doubt the only other surgery available to my postcode would be any different. I’ve seen the Head of Endocrinology at my local NHS hospital and she said she’d never offer me T3 as it’s ‘dangerous’ and likened it to being on steroids. Everyone I’ve ever encountered has said it’s in my head and that I’m in range, so I’m fine.

in reply to NWA6

In case you were unaware of the FACT - Liothyronine (T3) is "greenlisted" for use during RAI treatment where a short-lived effect is required and for extreme cases of lack of thyroid hormone where a quick result is neededUse of the T3 during RAI had zero bad effect on me 16 years ago. The lack of every other hormone other than T4 that I took after the RAI had a devastating effect on me until I started to take NDT.

NWA6 profile image
NWA6 in reply to

I’ve never had RAI. I just have Ords, - a disappearing thyroid. Lio is Blacklisted under my CCG

MaggieSylvie profile image
MaggieSylvie in reply to NWA6

What you are going through sounds really scary. I hope my misdiagnosis doesn't go in either direction. I am currently and gradually coming off all medications for one conition that have the potential to cause others.

NWA6 profile image
NWA6 in reply to MaggieSylvie

Good luck going forward and thank you for your support 🤗

cein profile image
cein in reply to NWA6

It probably is like a steroid in her eyes .. my son said they could buy them at the gym for guys to use to build muscle.

NWA6 profile image
NWA6 in reply to cein

Yes unfortunately bodybuilders do use T3 to 'shred' the fat from their bodies before competitions and there have been serious repercussions for those that do this for many months, year in and year out. However, an educated medical professional should be able to distinguish between this form of abuse of T3 and little ole me who needs it to live. But also, as far as I'm concerned if these bodybuilders want to do this to their bodies, if they can stomach the headaches, anxiety, mood disorders, and insomnia that most of them must feel when they take up to 60mcg per day then that's none of my business. (although I have read that oral T3 just replaces the work of the normal thyroid function, so it's not like they are getting natural thyroid production AND the oral T3 levels. After their competition they stop taking the T3 slowly and allow their thyroid to function normally, even in the bodybuilding community they warn against repeated use and that members of their community need to titrate up and down slowly)

Wired123 profile image
Wired123 in reply to NWA6

Could you register at a new practice at a friend or relative’s house as a temporary patient because you’re staying there “temporarily”?

You could look to find an area where there’s high prescribing of T3, you can find this out online on the NHS prescribing website

NWA6 profile image
NWA6 in reply to Wired123

This seems overly complicated and I'm not sure that I will be any better off. At least for now my GP does not weigh in on my thyroid levels and results and so I continue to get my Levothyroxine prescription with any interference from them, despite my yearly blood tests coming back as 'abnormal'

Bluespots profile image
Bluespots in reply to Wired123

Could you please DM me also on Private GPs for T3. Would be most grateful...as I am at that nearly well stage but no quite for lack of T3, and I am not strong enough to battle with the NHS. x

Wired123 profile image
Wired123 in reply to Bluespots

There are lots of online GP companies now, you can Google them. I have one via my medical insurance policy but they don’t accept patients direct, you have to have the insurance policy.

I can’t say for sure they will prescribe T3 but it’s worth a try using your Endo clinical letters.

The other option is to speak to an independent pharmacy that has GP service. Some pharmacies have agreements with private GPs so the GP will have a telephone chat and can prescribe direct to the pharmacy.

These are ideas, they may work, they may not, often will depend which individual doctor you are dealing with.

Bluespots profile image
Bluespots in reply to Wired123

Thanks for reply. No medical insurance.

Wired123 profile image
Wired123 in reply to Bluespots

Point I was making was that my online GP comes with my med insurance hence I’ve not been able to shop around so I can’t recommended any providers as I was simply stuck with the one that came with my insurance

Bluespots profile image
Bluespots in reply to Wired123

Got it, thank you.

NWA6 profile image
NWA6 in reply to Wired123

I doubt there would be many if any GP's who would prescribe T3.

NWA6 profile image
NWA6 in reply to Bluespots

I'm sorry you're not feeling optimally treated, I hope that you get as much support from his community as I have. Thank you for your response 🤗

I feel so sorry for you, it's the pits when we don't get the support we need. I don't know how some doctors can condone leaving their patients unwell.I do wonder if any Endo/doctor has looked into heart problems and/or osteoporosis in people who have to have a suppressed TSH following thyroid cancer and thyroidectomy?

Are those conditions prevalent in people with suppressed TSH or as I suspect there is no correlation.

I know people who have had thyroid cancer have to keep their TSH suppressed.

Maybe I'll ask my Endo the question next time he trots out osteoporosis and AF as a by- product of suppressed TSH.

NWA6 profile image
NWA6 in reply to knitwitty

🤗🤗🤗 thank you for your support. You can ask your Endo and Heaet health and osteo but you risk getting dropped!! Lol

Hi

I don't have any practical advice or tips as I'm pretty new here but I just wanted to say how sorry I am that you're having to go through this and how devastating it is when a health professional whom you've grown to trust lets you down. I really hope you manage to find a more sympathetic and well informed doctor or manage to source your own T3. All the best.

Thank you 🤗 That means a lot, support comes in many forms and I’m glad you took the time to reply 🤗

Me too. Its diabolical and soul destroying too, Id like to understand more about heart & bone concerns

If anyone can point direction pls?

Lots of well wishes 🌸

The correlation is the out dated view that a suppressed tsh equals too high t4 and t3.

There is one study with people without a thyroid where treatment suppresses their tsh to 0.006 I think. This is apparently ok but quite what happened below that wasn’t stipulated. My endo says it’s well documented that you should not surpress tsh but fails to have the time to entertain providing any proof of it. But then he thinks we ladies only want it for thick hair and to lose weight. His words. I kid you not.

NWA6 profile image
NWA6 in reply to Yeswithasmile

I’ve searched and searched. I cannot find why exactly these endos think suppressed TSH leads to heart problems and osteo 😩

All through my Thyroid disease I have had thick hair. I have enough hair for at least 5 or 6 people. I am at least 10lbs heavier than before I had children, I’m quite heavy but I must be really dense because I’m still only a uk size 12, before thyroid disease and children I was a size 10 - I’m 5ft 8. I’ve just always had a really athletic figure.

This never went in my favour when trying to fight my corner because I never looked overweight or had thinning hair, so I used to scrape my gaur back, not put make up on and wear extra layers, all to try and gain extra sympathy.

And now that I’m being told I’m overmedicated, I’m looking at myself and asking, where’s my rapid weight loss? Where’s my shaky hands and anxiety, how do I sleep for 8hrs a night if I’m so over medicated? How can I lay on this sofa and relax? Like I said, my sister had Graves, my god I wouldn’t wish that on anyone. She was super skinny, deep black eyes, anxiety and moody behaviour, she couldn’t even sit and have a cuppa, she’d always have to be up and doing something or she’d get a fizzy body and she was so goddamn tired every minute of everyday 😞

Yeswithasmile profile image
Yeswithasmile in reply to NWA6

I’m sure you’re grateful for not exhibiting those hypo symptoms. We all know there are plenty that do and still don’t get any help so I don’t think it goes against you. They just don’t take any of it seriously. 🙄. They’re not interested in quality of life. You unlikely to die on their watch so ‘go away and stop bothering my most important self. I’ve got a paper to scrape some other peoples facts into so I can get my bonus and buy myself a new Mercedes’

I suspect there is a lot of that thinking. Seriously people think females are that vacant. They should try struggling everyday just doing basic tasks...we all lived with the weight gain and the thin hair and nails, the 6 or so years it takes them to diagnose ( even with every symptom in the book) I did ask GP what risks, she mumbled "Heart" and nothing more. Really believe they have been told to lower medication.

vocalEK profile image
vocalEK in reply to knitwitty

Got curious and Googled "thyroid cancer osteoporosis" and found this study: pubmed.ncbi.nlm.nih.gov/311... Compared with controls, osteoporosis, but not fractures, was more frequent in patients with thyroid cancer (7.3% vs. 5.3%; odds ratio [OR], 1.33; 95% confidence interval [CI], 1.18-1.49) when controlling for median household income, Charlson/Deyo comorbidity score, and androgen use. Subgroup analysis of patients with thyroid cancer demonstrated that lower TSH (OR, 0.93; 95% CI, 0.90-0.97), female sex (OR, 4.24; 95% CI, 3.53-5.10), older age (e.g., ≥85 years: OR, 17.18; 95% CI, 11.12-26.54 compared with <50 years), and androgen use (OR, 1.63; 95% CI, 1.18-2.23) were associated with osteoporosis. Serum TSH was not associated with fractures (OR, 1.01; 95% CI, 0.96-1.07).

I have to wonder what the Vitamin D status was of these patients.

knitwitty profile image
knitwitty in reply to vocalEK

I wonder what vitamin D was too. When I last asked for my vitamin D to be measured I was told"we don't measure Vit D routinely because most people are low or deficient" I insisted as I would need the results for my endo appointment , it was done, but I do wonder if low Vitamin D has contributed to our dire deaths from covid.

Our NHS seems to be reactive rather than proactive, I'm sure it is due to the lack of GP's and lack of funding , but over the long term it really is not a cost effective way to behave.

vocalEK profile image
vocalEK in reply to knitwitty

*Duh!* So they are saying, "We are afraid you might need it so we refuse to let you know whether or not you do."

NWA6 profile image
NWA6 in reply to vocalEK

Thank you for that link'Because of excellent survival rates, the number of thyroid cancer survivors is growing and more individuals may experience long-term effects from the cancer itself and its treatments, such as osteoporosis and fractures

For me, it seems logical that it is the cancer treatments and not the low TSH that may experience effects.

Also, if the thyroid is destroyed, and in my instance, shrivels and dies, what happens to the parathyroid? I know they are not connected but physically, where do they hang from if they are located behind the thyroid gland. Is there no physical connection at all?

vocalEK profile image
vocalEK in reply to knitwitty

As far as heart problems go, it appears that the disease (hypothyroidism) is much more dangerous than the treatment.

"Cardiac Effects

In hypothyroidism, the reduced level of thyroid hormone causes the heart muscle to pump less vigorously and eventually become weakened.

In addition, the heart muscle cannot fully relax after each heartbeat. This failure to relax can produce diastolic dysfunction, a condition that can lead to heart failure.

Hypothyroidism also causes blood vessels to stiffen, which can cause hypertension."

verywellhealth.com/thyroid-...

And here's more: psychologytoday.com/us/blog... Low Thyroid a Major Cause of Heart Attacks

(Keep in mind that "low thyroid" results in high TSH.)

knitwitty profile image
knitwitty in reply to vocalEK

I can completely believe all of that. :)

NWA6 profile image
NWA6 in reply to vocalEK

Thank you for that link, yes this was my research too when I was investigated my usually low resting heart rate and also possible causes of why my Nan died so young (65yrs), she was on Levothyroxine but we don't know the reason for her hypo and the same with my mum, we dont know the reason for her hypo either (I was lukcy enough to have antibodies). My Nan had a stomach like she was 9mths pregnant, but no fat on the rest of her body, very little hair, so she wore a wig for the last 15yrs of life, was often on steriods for asthma. And we ALL have these very heavy and swollen eyes, esp our undereyes.

Feeling bad for you NWA6, I totally understand the anxiety we feel when we have someone who supports us and what if we lose that person or they change their mind? I see a private doctor for this reason and have to pile out the cash for at least twice a year appointment. I absolutely challenge the idea that a low TSH causes heart issues or osteoporosis. I do think that high T3 and T4 will do that, but not normal levels. We know that when we take meds with T3, our TSH goes down without amping our thyroid levels and I would love for your doctor to show you the info that's 'out there'. I hope that you can find a doctor who will support you. It's true that bodies use WAY more T3 when sick and fighting viruses, so your body is needing more right now, not less. Hoping you find the support you need.

Thank you so much for your support, yes I too have spent thousands on becoming optimally treated and my average spend for a year, for ongoing blood tests, private Endo and private prescription is around £700

So sorry to hear your experience. I think you’ve articulated very well, the anger at our doctors, which I absolutely empathise with. We shouldn’t have to go through so many battles in our quest to lead healthy lives. All we want is for our serious health condition to be treated appropriately and with compassion.

I hope you manage to self treat and your health gets back on track.

X

NWA6 profile image
NWA6 in reply to Frolie

Thank you so much for your response and compassion, yes, thats all we want ☹️

I feel for you. At best, its deeply disappointing that docs are entrenched in out of date information and point blank refuse to enlighten themselves. Im on 25mcg T3 and 125mcg T4 daily. For the first time in years, I feel normal and unbelievably Im losing weight. Thanks to this site, I aimed to get my levels up into the upper third of the range, and bingo, I feel good. Most Docs are under medicating and watching women get sicker. For the life of me, I will never understand this. Best wishes and hope you can source the meds you need to keep you healthy and happy.

NWA6 profile image
NWA6 in reply to Debbie2012

Thank you so much for responding and supporting, I am the same with my levels, as long as I keep them in the upper ranges I have no symptoms and lead a calm and busy life 🤗

I am so sorry to hear about your experience NWA6.

My levels are spookily the same as yours and I have had exactly the same wxeoeicne with a NHS endo who reduced my dose suggesting u woukd end up getting heart complications and osteoporosis later on.

I have since then experienced a fair bit of hair loss ans some weight gain :(

NWA6 profile image
NWA6 in reply to New2thyroid

thank you so much for your response, I am so sorry to hear that you too have been messed with and now you're experiencing serious symptoms. this is negligent, surely? What do we have to do to get taken seriously?

You can direct message me if you want, I can share my experience.

NWA6,

There is no data showing that a suppressed TSH will lead to cardiac & osteoporosis problems when FT3/FT4 are kept within range. It is only when thyroid hormones become elevated that metabolism speeds up enough to distort other systems. Due to down-regulations many members require a low/suppressed TSH to be able to function well but thyroid hormones will remain within range.

I am sorry you have suffered this also. Everyone above has said it all extremely well as most have experienced the let-down, frustrations, disappointments and feelings of isolation until we're pushed into self-medicating.

Self medicating can be worrisome but you sound knowledgable and together with help from our lovely forum, we manage. Many opinions allow good guidance/decisions and everyone is very supportive.

NWA6 profile image
NWA6 in reply to radd

Thank you so much radd. I do hope I can move forward and self-medicate. It seems like the best way forward because the thought of having to deal with these idiots for the next 40yrs feels like a punishment.

It’s cray isn’t it. Wonder what the evidence is for this idea having suppressed tsh/high in range T3 is dangerous? In my case isn’t the risk of a heart attack motivated by the 25% reduction in cholesterol? And can one not take something to offset the risk of osteoporosis? How can they not see we want to live well now not just worry about being sick later?

My Endo is threatening to remove T3 next time. I’m buying my own separate supply and I’ll hold off taking T3 for a few days before I see him for tests to skew the results. No point in being honest.

Meno56 profile image
Meno56 in reply to JAmanda

Would you be able to PM me to let me know where you get your T3. I’m just starting on supplements to try to improve my conversion from T4 to T3, but would really like to understand costs and logistics if and when I need to supplement with T3. Tbh from all these comments, I’m not sure seeing a private endo will be worth the cost!

NWA6 profile image
NWA6 in reply to Meno56

Hi Meno56, thanks for joining the conversation. Keep posting on the forum, updates, and build up a catalogue, a history of full thyroid and vits/minerals results. We need to get to know our fellow members and build up trust. As I'm I'm sure you can imagine we all need to protect those Endos that are trying to advocate for us (although they are few and far between and like in my situation, some are only willing to go so far) in order to help protect their medical licenses and unwanted attention. Also, we need to protect our sources when we do decide to go it alone, we dont want those shut down.

Meno56 profile image
Meno56 in reply to NWA6

Yes of course. I’m In stage one, trying to improve my vitamin levels first so will retest in 6-8 wks and report for feedback, as this entire process is complicated and help appreciated.

NWA6 profile image
NWA6 in reply to Meno56

Yes, I realised you’re in the early stages of trying to find help when I saw your profile, which was why I was trying to advise 🤗 I’ve followed you so that I don’t miss your posts and can hopefully offer support in the future 🤗

Bluespots profile image
Bluespots in reply to JAmanda

That is what I was thinking, I have a very controlled diet because of Hashis, but last time they lowered my Lecothyroxine my cholesterol soared sky high. Obviously connected to T4. And yet when my cholesterol gets back to normal they want to lower meds again even though all bloods in raise. It really is crazy. Anyone else they would be throwing cholesterol lowering drugs at you. Non of it makes sense, but they don't seem to realise the contradiction. Forever puzzled.

NWA6 profile image
NWA6 in reply to Bluespots

I can't make sense of it, I'm a logical woman, and I'm beginning to think that maybe common sense is being bred out of us, could be a new evolutionary phenomenon 😂

Didn't realise thee was a link between hypothyroidism and High cholesterol. I recently got myself checked and amongst other things my cholesterol has gone up :(

JAmanda profile image
JAmanda in reply to New2thyroid

There’s a definite link. Raising your T3?is known to lower your cholesterol. High cholesterol is one of the signs of hypothyroidism.

NWA6 profile image
NWA6 in reply to JAmanda

It is so bizarre, isn't it! My husband and I were talking about it and playing devil's advocate. Imagine living the next 40yrs optimally treated but in my later years I had osteoporosis and heart disease but I'd lived a full and happy life up until then, OR imagine the next 40yrs and I was not optimally treated and could not live a full life, every day a struggle just to get out of bed, no work, no college, no social life as it would all be too much effort and then in my later years I developed osteoporosis and heart disease. Although I probably wouldn't live another 40yrs, only another 18yrs left for me because I'll more likely die young like my Nan and her under medicated hypo treatment,

If they could show me the risk, data, research, give me the opportunity to make an informed choice, with all the facts, and then if I decided that I'd still rather live an optimally treated life, I would sign something to say that I have been advised of XYZ and its still my choice that 'over' treatment is still a better choice than living sypmotomatically.

I only ever met one good thyroid & adrenal doctor and he God Bless him was about to have his GMC registration withdrawn, and for what I would call non-compliance with the "Ws" you referred to above. Having been through so many similar "medical" instances in my 69 wonderful years, the only words of comfort I can offer, and which are in the back of my mind on a daily basis are as follows:

Whats the difference between God and an Endocrinologist (or even a Rhuinatologist which btw is a deliberate typo)?? The answer is that God doesnt make out to be either of them!

NWA6 profile image
NWA6 in reply to Benos123

Thank you For your support and comfort! an oldie but a goodie 😂This god complex is getting out of hand 😬

Hi NWA6, I may have misunderstood in which case this will not be a helpful comment, but ... If you of your own accord increased medication then when the endo interpreted your results, he will have been doing that based on you taking what he/she had prescribed, in which case worrying about your bones and heart would make sense. I think we sometimes forget that the medics are trained to mentally adjust for the amount of medication we are prescribed when looking at our results. Maybe you told him/her of your own increase, but, if you didn't perhaps you could reassure that those results were from taking the amount you want him/her to prescribe? I haven't explained well but hope you can work out what I mean.

NWA6 profile image
NWA6 in reply to thyr01d

Thank you for your response, let me see if I'm understanding your understanding of my post 😬😂I forwarded my blood test to my endo which showed a drop in my FT3 result. It was now down to 50%through range. I stated that based on previous tests and symptoms, I feel optimal when I'm at least 70% through range and so I want to increase my T3 from 20mcg to 25mcg. He said he'd discuss it at our next appointment.

I went ahead and increased it and so when I had the appointment with him, he said that I was already overmedicated and that he wouldn't endorse an increase and that he doubts very much that it is thyroid related, there must be something else going on with me to make me have these symptoms. I disagreed and said, well actually I went ahead and increased and all those symptoms have gone.

thyr01d profile image
thyr01d in reply to NWA6

How frustrating!

You probably won't be able to get an new endo within two months. That's negligence. Are you able to get him to at least keep up the 20 mcg prescription pending finding a new endo? This is emergency situation that will leave you extremely ill if the pills run out.

NWA6 profile image
NWA6 in reply to gabkad

I will try and keep getting the prescription from him, I;ll have to email and see what I can do. this is negligence, absolutely agree with you there. although of course, he's quoting the Hippocratic oath to me and saying he'd be negligent if he did endorse the increase! Its crazy!

gabkad profile image
gabkad in reply to NWA6

Well he doesn't have to endorse the increase but he needs to continue prescribing what you've been getting until now. Otherwise you life is in danger. Just let him know that heneeds to continue prescribing until you are under the care of another endocrinologist

which can take quite some time given the current circumstance. (Make Covid work for you.)

I have posted earlier this week about GPs lowering does. I believe that they have been told to reduce doses across the board. Something has happened, a research paper or something that seems to have set off an alarm somewhere. So sorry for you, we all feel the same, we were doing ok and now lowered doses. I wouldn't switch Endo if he has been sympathetic in the past. I have a suspicion that guidelines have been changed. Only time will tell if my hunch is correct. I have Hashis too, have you tried LND ? Worked miracles for me, everyone is different, I know. Sending positive thoughts.

NWA6 profile image
NWA6 in reply to Bluespots

Whats LND?

LindaC profile image
LindaC in reply to NWA6

I keep thinking of trying it - recommended in some quarters for CFS.

NWA6 profile image
NWA6 in reply to LindaC

But what is it?

LindaC profile image
LindaC in reply to NWA6

Sorry - Low Dose Naltrexone - higher doses are used for addiction [alcohol, not sure about the rest] but Low Dose is said to help those with fatigue.

gabkad profile image
gabkad in reply to LindaC

I haven't noticed. I'm again taking 4.5 mg before bedtime. I don't think it's doing much. But I keep taking it because maybe when I stop it'll all be worse.

My energy went down recently.

Could it be the weather? Rain, overcast, rain rain rain...........Today it 's blue skies but brrrrr, chilly. I've been out for a couple of hours and as long as a person is moving and

doing things, it's okay. A hint of what's to come.

LindaC profile image
LindaC in reply to gabkad

Thanks for that - I've kept adding stuff for years... even saw Dr P, who readily confirmed Dr S's dx in 2010, to try to reduce some of the supplements I'd kept adding to 'try to fix myself'. He approved them all and added two... aside from, "You'll need T3 for life + there's an adrenal problem... worst heel reflex I've ever seen". Maybe I won't add LDN? Dr SM recommends some good CFS supplements, they have helped me. xox

gabkad profile image
gabkad in reply to LindaC

I was just watching some video interviews about salt and how consuming inadequate amounts can cause all sorts of problems. I know there are people here who use Celtic salt to help with adrenals.

'The reduced amount of sodium available in the circulation that triggers the adrenal gland to increase production of aldosterone also increases adrenal production of the stress hormone cortisol and the fight-or-flight hormone adrenaline.'

I've experienced some issues especially while gardening that I'm wondering is due

to inadequate salt intake. The information I got from watching the interviews is that the recommended salt intake was not based on anything. No one proved that eating 'too much salt' would cause high blood pressure or heart disease or anything. In fact, the opposite is proving to be true and taking in too little salt is hard on the kidneys because sodium, chloride, and potassium come out of the blood into the urine but then if a person is low, the kidneys have to work hard to reabsorb these from the urine.

Well, blow me down..... okay. I'm going to make an effort although I think my taste buds are used to a lower salt intake than everyone else who tell me that they need to add salt to whatever I cook. And who find the food perfect when I can barely tolerate the amount of salt.

Apparently salt loading before a workout will improve performance. Since I don't workout I have no idea.

helvella profile image
helvellaAdministrator

I see the requirement for a doctor to get your informed consent for any treatment as an important aspect of medical ethics.

However, I cannot but see it as equally vital to receive your informed consent for any change to treatment including refusal to continue.

Furthermore, in the light of Covid infection, it is abundantly clear that there can be impacts on thyroid - though less clear what those impacts will be, and how long they will last.

That reason alone is sufficient, in my view, to consider continuing T3 at an adequate level being of the greatest importance. Even if a review were scheduled in a few months.

We often hear of patients being offered treatment vs. no treatment (palliative care). Why isn't it your choice whether you'd rather risk bone and heart or everything else (rest of body and, most importantly, mind and brain)?

Appropriate monitoring of thyroid and bone and heart, and appropriate adjunctive treatment (e.g. vitamins D+K2, calcium, magnesium for bones) might well reduce the risk dramatically.

vocalEK profile image
vocalEK in reply to helvella

You just expressed exactly what I was thinking.

NWA6 profile image
NWA6 in reply to helvella

Absolutely agree . We've just buried my FIL on Monday. I've had a horrendous couple of months, since Covid in Aug, viral infection. Not being able to see my dying FIL for the whole of August and very little in the past 2yrds due to his cancer and risk of infection - covid or otherwise. We got my eldest off to Uni in Sept - that's stressful. One son is under CAMHS awaiting an assessment, mental health issues, and possible PDA which means school is so challenging for him. Another daughter awaiting a CAMH's referral for Autism and another son who had his nose broken on a night out, so I'm going through police statements with him so he can press charges (video and witness evidence thank god). So you see, I've had huge amounts of stress and we all know how this affects autoimmune disease, the triggers. Even in those without autoimmune disease would see a potential depletion in thyroid production because of the stress of viral infection - however, I believe that with TLC, vits/minerals ect they'll bounce back. When that happens is varied from person to person. However, for me, my natural thyroid production is not going to bounce back. That's the difference, and if by some miracle it does and this is all just temporary, I'll soon know about it. I'm so good at monitoring my health, why am I not allowed to be part of my health treatment? Why!!!

helvella profile image
helvellaAdministrator in reply to NWA6

Honestly, I can't imagine going through all that.

LindaC profile image
LindaC in reply to NWA6

It was hideous stress that started all of my issues off... then GPs and endos on top of that! Do take care as best you can... xox

Sorry about your dilemma, I had the same issue with my last Endo. She kept wanting me to take more T4 and less T3 although my T3 was not near the top of range. My TSH was suppressed and all I heard was osteo and heart issues. She told me I was addicted to the T3 that's why I wouldn't decrease! I hope you can find a way to continue with your T3, I know like you it changed my life after 20+ years.

Goodness, addicted!?! Guysgrams, that is crazy. Perhaps these doctors are addicted to seeing women suffer xx

Incredible I know. We parted ways shortly after that.

I bet! There's just no helping some doctors!

Having suffered similar experiences, I certainly understand your anger and frustration. I have been comforted by a Thyroid UK paper I accessed a few days ago from this forum:

7 Myths of Hypothyroidism?

I hope this will be of use to you.

vocalEK profile image
vocalEK in reply to guysgrams

Yeah, I'm addicted to water, too.

NWA6 profile image
NWA6 in reply to vocalEK

😂😂😂😂😂😂😂😂good come back! I'm storing that one 🤗

gabkad profile image
gabkad in reply to NWA6

Don't leave out oxygen.

NWA6 profile image
NWA6 in reply to guysgrams

Funnily enough, my NHS endo said, I'd become addicted and also likened it to steroids and that if she ever had to prescribe T3, she would only do so for short periods of time because of the addiction!! I swear we couldn't make this up if we tried.

guysgrams profile image
guysgrams in reply to NWA6

It's amazing to me that they have a practice when they think like this!

LindaC profile image
LindaC in reply to guysgrams

No one much challenges them and UK, NHS patients, have little meaningful choice. Someone, Somewhere, Somehow, Needs To Do Something. It all got much worse from 2015 but it wasn't good even before then, despite Guidelines permitting way more liberal prescribing and NOT relying solely on #s. There is a gaggle of endos behind these changes... silly people who 'need to be right'. Bad Times. xox

LindaC profile image
LindaC in reply to NWA6

👺👽🧟‍♀️🖤🐍🐽 This is meant to be the 21st Century!?

gabkad profile image
gabkad in reply to NWA6

So you are addicted to feeling better? Being able to physically and mentally cope with your complicated life?The alternative being what exactly?

Bizarre.

Everytime my endo was waving the osteoporosis and heart disease flag, I'd reply, let's do a bone density test and a Holter monitor.

Response: that's for your family doctor to order.

Oh, well, she won't order a bone density test because I'm not 65+.

So much sincere concern it blows my mind.

/sarc/

Let us know how it goes when you contact this guy about how he has a responsibility

to continue prescribing T3 pending your acceptance by an alternate endo.

NWA6 profile image
NWA6 in reply to gabkad

Will do. I very much need to calm down or I will go full Irish and no one wants to witness that!

gabkad profile image
gabkad in reply to NWA6

My buddy is Jamaican. I bet full Jamaican beats full Irish any day. 😂

Good thing she's my buddy. That's all I have to say.

NWA6 profile image
NWA6 in reply to gabkad

No way Jamaican beats Irish, I’m from the North! Lol

gabkad profile image
gabkad in reply to NWA6

She's part Irish! LOL!

LindaC profile image
LindaC in reply to NWA6

❤️💛💚🍀 xox 🍀

See P10 especially:'....many people don't actually feel better until they are on a dose that does suppress their TSH level. My view is that you are probably more likely to develop weak bones when your blood TSH level is not suppressed.....'

knitwitty profile image
knitwitty in reply to setapart

I've often thought that it's not very good for your bones if you haven't got the energy to get out of bed or off the sofa when you are inadequately treated. But what do I know ??

NWA6 profile image
NWA6 in reply to setapart

Absolutely! Thank you for your support 🤗

So sorry to hear, we walk a tightrope with many problems including thyroid, the frustration and lack of support is shocking. I take nature throids and have found erfa helps my long term migraines too nut I still get them that is bad but not quite as severe ie. 5 day journies with vomiting. I see an endo privately that is ok to date but suspect a hospital I am under for other conditions try and persuade me to not go private, they are on planet zog! After 28 years of chronic not helped by misdiagnosis and neglect that is absolutely ridiculous, some were very simple infections so no faith but going back to your thyroid I hope you find help and the right doctor. My tsh is suppressed too.

NWA6 profile image
NWA6 in reply to AmberBee

Oh no, your journey sounds horrendous, I'm so sorry to hear that you are so unwell, I just wish we could all get the help that we need ☹️

WE, All of US, need to get together - following Dr Skinner's great efforts with his World Thyroid Register - to get something to happen for all of us, past-present-future. 👍💚❤️💛

NWA6 profile image
NWA6 in reply to LindaC

I really want to get a revolution started!

AmberBee profile image
AmberBee in reply to LindaC

Others have been to the UK parliments and still ignored sadly

LindaC profile image
LindaC in reply to AmberBee

Yes, I know - but rolling over and letting them 'do us in' is not an option - never say die!

These people are funded from the public purse! Not good enough!!

I'm overwhelmed with the response, support, and love emanating from this post. This is exactly what this forum is, a community that picks me up and carries me forward when the rest of the world just seems to try and batter me. Even though I am optimally treated, I still feel like this is an uphill battle. I now want to go through this post and re-read and respond and PM those of you who have given permission to do so.I do want to email this Endo and ask him to continue with the current prescription, at least until I can find an alternative.

I will not disclose the name of this Endochrologist, even in a PM, however, I will never recommend him again. I must remain cautious. We all must, whether we like it or not, these people have great power over our lives. This is the internet and as much as we all need each other, we don't know each other. We need time to build up trust, I may just be feeling vulnerable and therefore powerless but it's with good reason. There is no data to support the use of T3, or to not use it and for some reason, these endos are all singing from the same hymn sheet. Why are they all saying the same thing? Why are we being blocked from returning to full health, even when we agree to privately fund it? What the bloody hell is going on?

AmberBee profile image
AmberBee in reply to NWA6

Has not been good for sure dealing with health problems that are ignored or just missed, 1 problem due to a scan being refused by a few but am more aware now as to how to arrange a private scan. I was told by an endo that in the rest of the world they are becoming more patient led where the nhs are not regards endo and treatment options 😡

Well said! I've been a little less cautious - not naming names - but people can kind of guess who they are. 'They' are members of the 'Boys Club Choir' and any dissenters, even from their own number, are pulled in line or...!

There is certainly data to support T3 use - amongst others, Dr John Lowe [shaws is the one to ask about him] - even sent amazing papers to the UK Thyroid establishment, to be ignored out of hand. He published intensively on this and other matters - if you haven't already, do check him out. :-)

helvella profile image
helvellaAdministrator in reply to LindaC

A PDF Conversion of Dr Lowe’s Thyroid Science Website

A conversion of some of Dr Lowe’s website into a PDF to help make it accessible.

dropbox.com/s/w7cjut689r1w1...

LindaC profile image
LindaC in reply to helvella

Thank you helvella - I was lucky enough to get his book way back + lots of his papers - this, though, from you is a treasure. Thank you!

NWA6 profile image
NWA6 in reply to helvella

Thank you so much, I will start reading!

Interested in hearing how so many of you have suppressed or "downregulated" tsh. My point below * relates to this issue and especially the cause of it . I believe I have this Downregulation because when my t3 and t4 are bumping along the very bottom of range ,the tsh is too . But surely in a low t3 and 4 situation the tsh should be high ish ??? Anyway in my case I think that this suppression/Downreg is because in the past I've had dire hypERthyroidism ; it was post natal which I believe caused the Downregulation (?) .Its kind of like the body installing a fuse to make sure the tsh can never again demand very very high t3 and 4 doses and all its life threatening consequences. Does this make sense ? So going back to * above , IF it is possible to prove a known cause of Downregulation AND get the medics to accept that such a medical phenomena as "Downreg of tsh " actually exists ,then once these Endos have accepted that argument ,it must follow that the tsh result can be disregarded . For me ,and maybe you too,that would be great because then we could go straight to our low t3 and 4 readings to support our argument for supplements of these hormones. How can we get this Downregulation argument accepted by medics? Are there papers/research on it ? .

SlowDragon profile image
SlowDragonAdministrator

Plenty of interesting info in here on just why low TSH is not the same as low or high Ft3

It’s perfectly possible to have suppressed TSH and not be over medicated…..or can even be under medicated

thyroidpatients.ca/campaign...

NWA6 profile image
NWA6 in reply to SlowDragon

Thank you so much 😊 I am going to use this evidence when I email this Endo and try and work with them.

SlowDragon profile image
SlowDragonAdministrator

Low TSH and Covid

thyroid.org/patient-thyroid...

WHAT ARE THE IMPLICATIONS OF THIS STUDY?

The results of this study indicated that abnormal thyroid function is common in patients with COVID-19, with the most common finding a low TSH.

NWA6 profile image
NWA6 in reply to SlowDragon

Interesting but with me my TSH has risen over this year, fro. The first time I was asked to reduce Levo and then this very last blood test. From 0.005 to 0.01.

SlowDragon profile image
SlowDragonAdministrator in reply to NWA6

Yet still endo thinks you’re over medicated

I have/had the same endo & he is fixated with blood test results.

As a last resort, why not play the game too! Where an endo is likely to reduce an effective dosage if TSH is suppressed or FT3 is high is to skip meds for the 18-24 hours prior to the blood draw and not tell him that you did this. If it is this approach or having medication reduced then I would choose this.

Wishing you all the best! 😊

Agapanthus1 I do exactly that every time I have to have a thyroid blood test. All a game at the end of the day

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