Query about suppressed TSH: Hi guys, I am on NDT... - Thyroid UK

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Query about suppressed TSH

Lisaf01
Lisaf01

Hi guys, I am on NDT, currently 2.5 grains. I have confirmed I have the genetic conversion problem and I've found I only feel optimal when my free T3 is right at the top of the range. Even slightly below the top of the range causes me to be symptomatic and my hair starts dropping out again.

My last test in May was TSH 0.007, FT4 17.2 (12-22) and FT3 6.83 (3.1-6.8). I felt good.

I've been feeling a bit more depressed recently, although could be weather related. Did a test this week and my TSH is now 0.005, FT4 14.8 (12-22) and FT3 5.96 (3.1-6.8).

Given that I need my FT3 to be as high as possible, and based on the way I am feeling, coupled with these latest results, I was thinking about increasing to 3 grains every other day. The Doctor's response on medichecks was that I am at risk of osteoporosis and heart problems with such a suppressed TSH, and should decrease my medication.

My first instinct is to ignore his advice, because I know that my TSH is supposed to be suppressed when on NDT and I feel I need to get my FT3 just that little bit higher, however, I have read an article stating that any level below 0.03 puts you at risk of cardiac events and bone problems and mine is always way below that when my FT3 is optimal. sciencedaily.com/releases/2... Typically I ignore Doctors' pronouncements on this topic, but since this was a study, should I be paying more attention?

So I wonder if any of you experts have any advice? Is this a complete red herring (how can it be when this study was based on 16,426 patients)? Is it worth considering T3 only or is it just as likely to suppress my TSH to the same level as the NDT does?

36 Replies
oldestnewest

A study that just looks at TSH and ignores the FT3 level deserves to be ignored.

T3 only would suppress your TSH just as much - if not more - then NDT. I've been on T3 only for years, but my TSH was suppressed long before that. :)

Lisaf01
Lisaf01 in reply to greygoose

Yes, I see what you're saying. And my further research tells me that many untreated hypo patients would have bone loss anyway, from being too tired to be active, so any such study would include a proportion of those patients as well.

I guess as being treated for hypothyroidism is supposed to increase the metabolism of all systems, I suppose if you already have bone loss going on, it could be increased if your metabolism increases. I know I've read that somewhere actually.

I guess I did know the answer to my own question but the constant mis-information is hard to deal with because even when you have done a lot of research and carefully planned everything, the doubts creep in from time to time. Certainly I feel miles better but I am a tricky case and have had to do this all on my own because I've never been diagnosed due to my normal TSH being around 0.8 so there's an extra level of anxiety and self-doubt involved there. Nearly all of my symptoms have reduced or gone completely and the main thing I still suffer with is my weight, but I think that's mainly still due to lack of exercise. I just noticed the low mood creeping back in, and for me, the slightly reduced FT3, the recent weather, and external stressors could be responsible for that. Just trying to decide whether to increase slightly, every other day, or just stick where I am for another couple of months.

I'm now anxious again about how I will deal when I start getting doctors on my case about my very suppressed TSH in the future if my IVF treatment works. I have prepared a 20 page dossier to take to appointments which has my entire history and lots of extracts from studies and papers etc but it's still quite worrying.

greygoose
greygoose in reply to Lisaf01

Ignorance is always worrying. And doctors are very ignorant when it comes to thyroid. But, there is plenty of research that says that a suppressed TSH when on thyroid hormone replacement does not increase your risk of heart and bone problems.

I take it you have a pituitary problem if your natural TSH is only 0.8? Very few doctors know anything about that!

Lisaf01
Lisaf01 in reply to greygoose

I don't know if I have a pituitary problem, but it must be. I know I do have a conversion problem and I did have an rT3 problem initially as well (I think that was mainly due to other deficiencies of which I had a lot. I also have a long history of anxiety and depression and at least a hundred other known thyroid symptoms.

I gave up trying to get the doctor to understand my symptoms. He absolutely insisted my thyroid was completely normal based solely on my TSH and the fact that I wasn't missing the outer third of my eyebrows, and he started mentioning fibromyalgia and CFS, and I just gave up and sorted it out myself. I initially thought correcting all of my vitamins would sort the problem and had to work hard at my lowest point to get B12 injections out of them. That was a total nightmare to get the full loading doses and then they just cut me off once my level was up to above the range. It was ridiculous, so I just started doing it all on my own.

I've corrected all my vitamin and mineral issues now, although I am still not happy with my ferritin (last result was 84 (13-150)), so I am still working on that one.

My biggest anxieties are being questioned if I become pregnant, and whether there might be something more sinister going on which caused the problem in the first place. I think this worry about anything sinister is unfounded though because I've been on a downward spiral for so many years, I think something more sinister would have presented other problems by now, but it does worry me from time to time. I just can't push the medical profession any more than I already have and have been forced to take things into my own hands.

greygoose
greygoose in reply to Lisaf01

Yes, I understand. I had no problem getting diagnosed because my TSH was 11.5. But trying to get good treatment after that was a nightmare. I now self-treat, too.

Perhaps, once your body gets used to having good levels of FT3, you won't need IVF, you'll get pregnant naturally. :)

Lisaf01
Lisaf01 in reply to greygoose

You're right. The route to diagnosis can be impossible, but even when you have been diagnosed, you might have to go it alone to get optimal treatment.

I think due to my age and very old eggs, that will now be out of the question. There are other factors as well, so we're unfortunately stuck with the IVF as our only hope now. But yes, for others, fixing the thyroid definitely gives them a much greater chance.

greygoose
greygoose in reply to Lisaf01

I'm so sorry to hear that. But, you could find a sympathetic doctor to help you with the IVF. They must see it all in their job. :)

Lisaf01
Lisaf01 in reply to greygoose

They do see and correct a lot of thyroid issues, but there's no way my clinic would understand the thyroid self-treatment, so I just don't go into detail about it. I gave them my levels before I started and they didn't query them. They haven't requested another thyroid panel and I've been with them for over a year now, so I don't expect they will.

I've researched what I need to do about monitoring and dosage during a pregnancy to make sure baby is OK, so the only issue I will face would be when the NHS monitoring kicks in and they do a thyroid test. The suppressed TSH then will cause a big concern and they will do their best to try to convince me I am insane and doing it all wrong and will harm the baby. So I am have prepared for that with a huge document containing all the information I've found.

greygoose
greygoose in reply to Lisaf01

Well, it sounds as if you've got it all worked out, and that's great! :) I wish you lots of luck and hope you get pregnant soon. xxx

Lisaf01
Lisaf01 in reply to greygoose

Thank you so much.

shaws
shawsAdministrator

People who have had thyroid cancer have to HAVE a suppressed TSH and they don't appear to come to any harm.

This is from a Hormone Specialist:-

hormonerestoration.com/

hormonerestoration.com/PCon...

Baobabs
Baobabs in reply to shaws

When I told my Endo this he said yes there was plenty of evidence out there that thyroid cancer patients with suppressed TSH suffered bone loss but ignored me when I asked for references.

Lisaf01
Lisaf01 in reply to Baobabs

Good point. And even if people with suppressed TSH suffer accelerated bone loss, there's no proof it is the suppressed TSH causing it.

shaws
shawsAdministrator in reply to Baobabs

He'd have to ignore you as he is unaware of the true answer. They all seem to have some sort of 'guess' when dealing with hormones, without which we'd all be very unwell to say the least. An Endocrinologist, I think, is not knowledgeable about hormones in general but will prescribe 'other' for the symptom instead of optimum thyroid hormones.

Baobabs
Baobabs in reply to shaws

How irresponsible is it to make a medical claim so thinly veiled? when you are the person struggling and suffering with the disease it smacks of scare mongering. At the end of the day there is diddly squat in it for them. I can think there will be many folk who take this nonsense as gospel.

I laughed out loud on reading this piece of research when I scanned that hypothyroidism is 'easily' treated.

Lisaf01
Lisaf01 in reply to Baobabs

You're right, I was so focused on my specific query that I bypassed that ridiculous statement.

It should be easily treated, but it simply isn't and that's down to big pharma and out of date doctors.

shaws
shawsAdministrator in reply to Lisaf01

It must be how endocrinologists are trained (taught) that we are diagnosed if TSH reaches 10 (in other countries it is 3+) then when the TSH is somewhere in the range (up to 5) that the patient is on sufficient and anything else they complain of is not due to hypothyroidism. How wrong can they be. They are willing to prescribe other meds for the symptom rather than optimum thyroid hormones.

Lisaf01
Lisaf01 in reply to shaws

I totally agree, the whole situation is nuts.

shaws
shawsAdministrator in reply to Lisaf01

Lets hope they will finally see sense instead of spouting nonsense. The fact that we can congregate on this forum and learn how best to care for ourselves if doctors/endos are unable to do so. Those doctors who did may have lost their licences or the threat of it so that they 'toe the line'.

One of our doctors - Dr Skinner was hounded for treating patients to good health because he diagnosed upon symptoms as well as blood test - as he and Dr Peatfield were taught. How many doctors do you think - treating people who have dysfunctions of their thyroid gland in this present day would have 10,000 testimonials sent to the GMC stating that he saved their lives. I think the Associations got umbrage because it was a Virologist who was diagnosing and treating those who were not. Dr S also arranged a Conference to discuss the 'parlous situation' of patients and invited every single endo and one by one they refused - the last on the evening before.

How does that 'fit' with caring for those who have hypo and having original hormone replacements removed from the NHS (NDTs) - people having to source their own - then the fiasco with the withdrawl of T3 without any notice or warning so that people who were well on it were left floundering and searching.

I would be interested to see some studies undertaken long term looking at the effects on bone health/heart disease of thyroid patients with a high TSH and low FT3/4 circulating ( untreated). I bet this would cause problems in the body. Trouble is it would be difficult to sample this targeted group as hopefully ( hmmmmmmmmmmmm .................... And don't hold your breath) they would be receiving appropriate remediation treatment. Also what is the average TSH, FT4 and FT3 levels of folk not suffering from hypothyroidism? Please no one tell me this is not relevant. It sure is as it's a norm benchmark. I know 4 of my friends/family members have TSH between 1 and 2 so relatively low on our range. Are many folk top of the range, middle, low regarding FT3/4? We will probably never know unless the thyroid is investigated for malfunction. I would even ask where are the ranges for any of these markers taken from? Perhaps they are all wrong. As I have osteoporosis and am currently wading my way through a forest of info, I know the causes and progression of this disease is very complex and I would guess that the interplay of a suppressed TSH is simply another variable to be considered.

Lisaf01
Lisaf01 in reply to Baobabs

I am not sure if there are studies of normal levels, and how can there be, when doctors are clearly mostly of the belief that you're not hypo until you hit a TSH of 5, or even worse, 10.

The ranges supplied by labs include all the people who have had thyroid tests, so that's healthy people, non-diagnosed people, and diagnosed patients receiving treatment (most of them, probably too little treatment).

So the lab ranges are simply not a representation of confirmed healthy or euthroid patients.

Baobabs
Baobabs in reply to Lisaf01

Interesting again ................................. So what can we possibly conclude about ranges used?

Lisaf01
Lisaf01 in reply to Baobabs

They don't represent euthroid individuals without thyroid problems. Many lab ranges are developed this way. They just take all the results for a certain time period, and exclude the top 5% and the bottom 5% and there's your range.

Absurdity at its finest.

Baobabs
Baobabs in reply to Lisaf01

Mmmmmmm. Unless someone knows otherwise?

Just in case anyone is interested, who is in the same boat as I was before starting treatment, my "natural" thyroid levels were:

TSH: 0.8

FT4: 17.3 (12-22)

FT3: 4.3 (3.1-6.8)

rT3: 31 (10-24)

I only feel "normal" when my FT3 is over 6, and I only feel "good" when it's right up near or at 6.8.

Baobabs
Baobabs in reply to Lisaf01

Interesting. I have never felt good on any treatment but I can honestly say since beginning T4 meds 20 months ago and T3 six months ago, apart from a very low, sometimes suppressed TSH, my FT3 is amost the same and my T4 is on the floor!

Lisaf01
Lisaf01 in reply to Baobabs

Your FT3 is almost the same as it was before treatment, or almost the same as mine was before treatment?

Have you tested all your vitamin levels and sorted any that weren't optimal (not just in range)?

Yes my vit/min levels are all three quarters to top of the range. My Endo suggests I have a screen for other anti bodies and autoimmune diseases. I actually feel worse now than I did prior to diagnosis and it would seem that treatment has made my thyroid malfunction more or more quickly. My skin and hair are amazing due to my fantastic diet/supplementation, but my energy levels poor, bone/muscle pain horrid, dreadful constipation, disintegrating nails.

Lisaf01
Lisaf01 in reply to Baobabs

Sorry to hear you feel worse. Sounds like your endo is working with you on it though.

Bear in mind some of the ranges for vitamins suffer the same poor range definition as thyroid hormones so they may still not be fully optimised.

Baobabs
Baobabs in reply to Lisaf01

Thanks for your kind words but I fear there is something a bit more sinister than vits/mins.

Lisaf01
Lisaf01 in reply to Baobabs

I really do hope you and your endo get to the bottom of it, whatever it is, and I hope it isn't something sinister.

Thank you. I also hope your situation improves. Sometimes chasing medical people, rehearsing what we want to say etc all adds to the stress and delayed recovery. Is there a GP in your area someone could recommend re pregnancy/IVF and thyroid related issues?

Lisaf01
Lisaf01 in reply to Baobabs

I have tried, but even the good endos don't want to touch me if I get pregnant and I am really fed up with going around in circles trying to find one.

If only we could get back to the days of my childhood when you were asked to sit down and the doctor would be taking your pulse and looking at your tongue. Next would be feeling at glands so at this point he would already have ideas as to what was bothering you. He wouldn't write out a prescription just to get you out of there but would ask many questions whist he took notes but I always seemed to get the right treatment. Now it might as well be a post code lottery though we don't win the prize! Of course a correct diagnosis would help or even let's try ........... And what's this 10 minute appointment about? Surgeries often used to overrun but no one complained as they knew they would improve after the visit. My doctor is very thorough but the downside it's often a three week wait for an appointment unless you are lucky enough to grab one of the two or three that can only be booked on the day.

I completely agree with what is being said here. I suffered for ages with a gp who treated my blood tests (or rather just my TSH) rather than me, and he completely ignored how I told him I felt, and ditto when I changed to a Breast Consultant 'who also did endo'. My symptoms were upside down in that the higher my TSH went (30 at one point) the more agitated I became and the more weight I lost. Now I take Armour Thyroid which after many years buying it from Texas I can now get in London. I mostly ignore the blood results and go by how I am feeling aa well as supplementing with good quality vitamins. I am under a broad-minded General Physician who seems quite relaxed about this. But since I have been reading posts from others and the advice given here I have learned so much for which I am very grateful. Luckily I found my own way out of my mess, probably more by chance, about 10 years ago, but I'm horrified at what yiu and other people are experiencing. Good Luck Lisa.

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