I have no thyroid . I am a female and have in the past been a steady weight of 9 stone 8 pounds . I am being treated by an Endo who mainly treats Diabetics. He has now reduced my levo to 75 mcg and my Liothyronine to 75 mcg per day. I have been steadily putting on weight over the last 6 weeks and now weigh10 stone 3 pounds despite hardly eating as I have no appetite . I am falling asleep suddenly through the day so can't sleep at night.My hair getting thin, I am feeling cold and having to wear a thermal vest when everyone else is wearing a T shirt, I have poor balance, no energy at all Ialso have brain fog .I am now exhausted, very depressed to the point of desperation and so weepy and am now very worried as I am feeling so awful and wonder if I am seriously undermedicated on this dose?
( he has taken down my Levo medication twice. I was originally on 100 mcg Levo and 10 mcg Liothyronine.He has never tested me for Folate, D3, Cortisol etc, (as Grey Goose advised is necessary )and neither sent me the full results of my Thyroid bloods tests taken on the 8th of May although I reqested them.
I feel I am just not being listened to.I have thought about a private Blue Horizon test, but it is so expensive for me and would he take any notice of the results even if I did get this test done - or dismiss it as possibly not accurate??
I did speak with his secretary to ask if I could send her an email to pass on to him about this, and she said that was fine so I emailed her on the 24th of June.and very politely explained all my symptoms to him in the email but he has not replied.
If my endocrinocrinogist doesn't reply to my email/take this seriously what can I do? I feel so desperate to feel well again.? Can I get a second opinion?
Written by
HilaryWB
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I would go back to the dose you previously felt well on rather than wait for a reply from him, you should be able to request the B12, folate, Ferritin and Vit D tests from your GP. Do you have any previous results to go on? I'm assuming due to the Lio you have a low TSH which is why he is reducing your doses in the vain hope it will raise your TSH but in the meantime making you very unwell.
You need to insist he treats you on your free levels T3 and 4 and listens to your return of symptoms... I'm sorry you have a plum but you might be able to educate him 🤗
So, averaging 7.5 mcg daily which equates to about 22.5 mcg LT4. You are on the equivalent of almost 100 mcg levothyroxine, this is below a typical dose so likely to be insufficient.
So sorry to be banging on about things but I have deadful wooly thinking just now So it is not all in my head after all, ( in the past I was given antidepressants when I now know I was Hypo)but the problem is what do I do now? How much Levo/T3 would you expect someone like me without a thyroid to be taking ? I really do do feel underdosed but only those on this forum really understand what it is like . I feel like a tiny fish in a huge pool, but there musr be a way round this. Should I get a private blood test for my levels and then send the results to him? It seems he has the upper hand in all this,and my brother says " How DARE you question your consultant about your treatment" How can I explain to him that I am not being treated properly?
Was just TSH tested when your endo reduced your thyroid medication, or FT3/ FT4?
As TiggerMe suggested, I would look to return to the dosage where you felt most well.
I understand that testing of full thyroid levels & key vitamins is expensive, but it is good to have a full picture of your thyroid health. Sometimes lab testing companies have thyroid tests on offer, so it may be worth comparing prices of Blue Horizon/ Medichecks etc.
After RAI thyroid ablation it is essential that you are dosed and monitored on your Free T3 and Free T4 blood tests and not a TSH reading.
Chasing a TSH reading to get it in the range will make you ill -
as will adjusting up and down your daily dose of T3 - Liothyronine -
and I'm afraid this endo is not going to help you improve your health and well being - though likely working within NHS guidelines.
Primary hypothyroidism post RAI thyroid ablation is more difficult to treat as the feedback loop - the Hypothalamus - Pituitary - Thyroid circuit loop now broken as you thyroid burnt out in situ and disabled - and this loop - for want of a better description - open ended and a totally unreliable measure of anything.
You must be dosed and monitored on your Free T3 and Free T4 readings with each hormone adjusted independently until you find your unique set point and your T3/T4 hormonal balance.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 known to be around 4 times more powerful than T4.
No thyroid hormone replacement works well until the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels:
Some people can get by onT4 only :
Others find T4 seems to stop working as well as it once did and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - the T3/T4 hormonal balance is restored and their health and well being improves.
Others can't tolerate T4 at all and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3 :
Whilst others find their health and well being improved better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
Years ago doctors in primary care had all these treatment options at their disposal if T4 - the cheapest treatment option did not resolve symptoms of hypothyroidism - but now are just left with anti depressants as a second line treatment - which do not work - and leaves the patient feeling its all in their head and / or not believed.
Systematically over the past 20 years the prescribing of both T3 and NDT have been discouraged with endocrinologists now responsible for assessing your need of anything other than Levothyroxine.
Your consultant is not even a specialist in the field - and would think you are entitled to a second opinion and an endo who is supportive of alternative treatment options.
Thyroid UK - the charity who support this open patient to patient forum - hold a list of recommended thyroid specialists NHS / Private - maybe email admin @ thyroiduk.org and see who and where you might find better help -
Just be aware that there is something of a postcode lottery within the country with some endocrinologists constrained by local ICB financial restraints and actively encouraging patients ' off T3 / NDT ' rather than working with and for the medical need of the patient.
Barbara S Lougheed's book - this lady had RAI thyroid ablation :-
Tired Thyroid - From Hyper to Hypo to Healing - Breaking the TSH rules :
Elaine Moore - another lady post RAI thyroid ablation and whose books and website are where I first started off trying to understand what had happened to me - 10 years after my RAI thyroid ablation in 2005- when I became much more unwell - details on profile page - elaine-moore.com
Thyroid UK - thyroiduk.org - have a library web page - but an additional book that may well be a more realistic overview of your overall health now is that written by a doctor who resigned from the GMC rather than face constant hounding for treating patients as he saw best :
Barry Durrant-Peatfield - Your Thyroid and How To Keep It Healthy - I know it reads counter- intuaitive as we haven't thyroids but it's about whole body synchronisation and the role of every part of your body and the knock on effects when things aren't quite right.
If you have a doctor / endo/ consultant / specialist who knows how to treat thyroid health issues it doesn't need you to be doing the reading up and learning - and for some T4 - Levothyroxine does the trick and they never need to pick up a book or question their treatment.
It's not just people without a thyroid as can be seen by the fact that if you scroll back up to the top of this page we now have just over 139 K members all looking for help and advice - when I first found this forum in around 2015 there were just 15 K -
so the situation has become a lot worse with thyroid treatment options systematically being withdrawn from primary care doctors and the guidelines in place not fit for purpose.
Just reading this forum and other peoples struggles is a learning curve all of its own -
I 'm Graves disease post RAI thyroid ablation 2005 - and now stay away and self medicate as I was refused both T3 and NDT through my doctor and hospital in 2018 and fighting this system simply exacerbated my ill health further.
Otherwise there is always that shop in a cloud floating above us !!
I am certain that where I live I would not get Armour. My Gp says he can reqest the screen for folate, D, ferratin etc but the labs will refuse to do it!Also I understand all you say above, but how can I get my Endo to take it on board?
Where I live (Tayside) the main teaching hospital is about 45 million + in debt, and they are cost cutting big time - taking folk of expensive drugs especially if they are elderly as we are seen as expendable!
Yes I know and its country wide and why many of us have ended up - Doing It for Ourselves :
If you can afford to go Privately - the landscape is very different - but you still need to know who to see - and Thyroid UK - the charity who supports this patient to patient forum hold a list of patient recommended specialist both NHS and Private - so it might be worth contacting admin @ thyroiduk.org and have this list sent to you.
Also you can ask for recommendations on the forum - explaining whereabouts you can travel to - or if happy for a video consult - and your replies will be by Private Messages ( which is the paper plane - Chat icon ) and lights up if anyone replies to you - as we are not allowed to openly discuss anyone by name of this open part of the forum.
The GP should be able to test everything you mention but, if needs be, the cheapest seems to be from Monitor My Health. And there's a 10% discount with the code THYROIDUK10 They are an NHS lab at Exeter hospital, and doctors probably accept their results more than other private tests.
1) your Endo's Registrar (a young doctor who you said panicked because of your results and age; was rather rude/abrupt; and also told you, "you will/should expect to feel worse" after/due to the [first] dose reduction) being the one who started messing about with your dosing (more recent posts); and
2) your actual Endo Consultant, who you say was not only a proponent of prescribing T3 where needed, but: read your notes when you first saw him; looked up from those notes and said something to the effect of he was 'amazed you were still alive' [following the mistreatment/poor decision making/neglect you had experienced over the previous 30/40 years]; and, furthermore, that following this consultation he not only prescribed T3 for you but, "gave you your life and eyebrows back" (within months of seeing him, iirc?) and you also said, again iirc, you'd lost weight/gone back to the weight you'd been years ago, etc., and felt better than you had done for years - as most would if treated correctly, according to symptoms and what our bodies need, instead of purely by numbers on a screen, which obviously includes age being one of those numbers.
Would you please just confirm whether in referring to your 'Endo' and the person who is messing about with your dosage and returning you to your former state, you are actually referring to 1) above - the Registrar?
If, as I suspect, it is the Registrar, then this is different from your Endo Consultant. They are discrete entities and your Endo Consultant (or at least the Endo Consultant you indicated that you saw ?2 or 3 years ago) may not even be aware of what this Registrar has done in messing-up (polite) what he had finally managed to reverse (n.b.from my comprehensive search of your Endo, which I DM'd you about if you remember, I saw that not only did it look as if the majority of his work was at the University of Dundee but, that: he was an Honorary Consultant in the Endo dept; furthermore, that he was one of the contacts in an advertisment for an Endo Consultants post a year or so to join the Endo dept you were seen at by him; and, from his LinkedIn page, that he was 'advertising' himself as being available for alternative posts away from where you are, even further afield in other countries).
From this (my n.b. particularly), at a guess, the Registrar you have seen could well be acting under the directions of a different Endo Consultant or even off his own ignorant/muddled 'thinking'. Whichever, you do have options but, I'll wait for your response before trying to suggest anything further. However, I will end by saying, what this registrar has done, in returning to you a worse and worsening state of health, is absolutely not on.
Thank you so much for your kind concern, at the moment I have brain fog, but will try to clarify things.It was the Registrar that told me he was rducing my T3 as he was concerned about "cardiac issues" although I have had about 3 ECGs done in the last couple of years, and no abnormality was delected.He also mentioned the risk of osteoprosis but I have had several DEXA scans and I do have some bone loss (I am 75) but a recent xray for my neck of Cervical 4/5 vertebrae for a suspected "pinched "nerve which showed no fracture and some osteopaenia NOT osteopososis.
After I left the clinic, a bit shell shocked at what the Registrar tod me I contacted Dr Malik's secretary to tell her what had happened, ie, the Registrar's comment that I would "feel worse" and that this Registrar did not even have the courtesy to introduce himself to me.During the consultation I was "told" that T3 was being reduced for the reasons above, and no discussion ensued. I then received a letter from Dr Malik who appologised for his Registrar's behaviour and that he had been on leave, and that his Registrar was very capable but he would "have a word" with him. He then continued to write that I was to remain on 75mcg and my T3 was being reduced to 10mcg and 5mcg on alternate days which I understand from forum members who replied to me and by my own research of papers and references I got from fellow menbers is simply not appropriate.Also I have NEVER been tested for ferratin, vit d, folate etc. The email I sent via his secretary is below -
For attention of Dr *******, Endocrinology Consultant, N**** Hospital
Dear Dr ****
As one of your patients, I was seen recently by your Registrar on the 9th May 2024 at 9:45am in the OPC. You had previously requested a full Thyroid blood test be done before that appointment.This was done at Pitcairn Practice on February 8th at 10:15 am but I had taken my Thyroid medication at about 9 am that morning before the bloods were taken.
In your follow up letter to me dated 25th May, you wrote that you wanted my TSH to be over 0.1, and my FT3 reduced to below 8.5 ( the recommened range being of 3.5 - 7.8 ). My FT4 was 16.5 which appears within range (between 9.0 and 25.0.)
I note that you also decided to alter my Liothyronine medication despite your Registrar telling me that if this was reduced I would then feel "a lot worse"- ( a comment which naturally I was not expecting to hear so bluntly from a Physician.)
Below is the change in medication I was to follow -
1 Continue taking 75mcg Levothyroxine as before.
2 Liothyronine to be reduced to 10mcg and 5 mcg on alternate days. ( giving 75mcg T3 in overall total)
Results after trying the new regime of splitting my Liothyronine -
1.I felt what I consider was normal for me on the days when I took 10mcg Liothyronine.
2. However,on the days when I took 5mcg,I had many undesirable symptoms as follows-
Brain fog,poor appetite, mood swings,poor concentration, clumsiness,feeling very cold, often bursting into tears for no obvious reason. I am also experiencing fibromyalgia type muscle pain.I am exhausted,to the extent that I fall asleep inappropriately during the day on the days when I take 5mcg Liothyronine
Having lived with no thyroid function at all for 40+ years (I had my thyroid destroyed post partum after a diagnosis of Hashimoto's Thyroiditis and afterwards existed only on Levothyroxine replacement) I became familiar with varying degrees of both hyperthyroid and hypothyroid episode. So I believe the above symptoms I am now experiencing are symptomatic of hyothyroid issues.
With respect regarding my raised FT3 result, may I suggest a possible explanation for this? I believe this may be related to the timing of my taking my thyroid medication before the blood test I had taken at Pitcairn Practice? Unfortunately as you will know the big disadvantage of Liothyronine is that if blood tests are taken soon after taking a single morning dose of Liothyronine, then the level of FT3 can appear abnormally high.This causes the initial peak in the blood, then a short time later the level will decrease.
Consequently if I had a falsely elevated value of T3 on the day I was at the clinic this result may not have been indicative of what my actual level of FT3 is throughout the day.Also I am waiting for a diagnostic MRI for ?cervical spondylosis at C4/5 ,and I had been taking Asprin which I now understand will interfere with Thyroid blood results but I have since stopped this.
So with respect will you consider allowing me to trial taking my Liothyronine as 5mcg - but twice daily, morning and afternoon, ( total 10mcg) instead of one singe dose of 10mcg in the morning?
Hopefully this will relieve my hypothyroid symptoms by supplying a more even amount of T3 throughout the day, then next time I am required to have bloods taken for review ( which you mentioned would be 3 months from the date I was seen in the clinic on the 9th of May) then I believe the next Thyroid blood test may well show a drop in the FT3 result to within range.
If you don't wish to allow me to try the above, perhaps we could explore other issues that might be affecting the blood results, and making me feel unwell such as Vitamin D, folate, ferritin B12 and Cortisol levels which maybe relevant as I understand these can be low in Hashimotos.
Thank you. I look forward to your comments/suggestions,
Kind regards,
Hilary W Brand (DOB 6/2/1949)
Letter sent 26/06/2024
I am still waiting for a reply. However in his letter to me Dr *** just seemed to implement what the Registrar told me was going to happen, albeit Dr*** decided to lower my T3 by splitting the dose to alternate days of 10 and 5 mcg Liothyronine!
I feel I am swimming against the tide with this problem, , my family believe Drs are God and should never EVER be questioned /held to account but I am a trained staff nurse and I know that is simply not true, there are good doctors but some are very bad indeed,so I am very grateful for the wonderful support I am getting from this site.
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