Normal TFT’s but still having symptoms – Abstract on PubMed and useful ammunition to print out if being fobbed off by doctors.
Why are our hypothyroid patients unhappy? Is tissue hypothyroidism the answer?
ncbi.nlm.nih.gov/pmc/articl...
Isis x
UNHAPPY HYPO's: Normal TFT’s but still having... - Thyroid UK
UNHAPPY HYPO's
Written by
Merkaba
To view profiles and participate in discussions please or .
34 Replies
•
Haven't read the whole article. Got to "should we treat the whole body" and stopped. Of COURSE the WHOLE BODY should be treated. What a dam silly question. They cannot treat just one small piece and leave the rest to "rot" shall we say. It is all so intergrated. Like a car --- if it lacks either oil. water or petrol, pisterns don't work, tyres are flat or not inflated properly you do not get the best performance.
Brilliant article, really helpful, thank you.
Excellent article 
A good paper, I should think it applies to many of us. How do we convince our doctors?
Great article - I will have been on my T3 together with 50mcg of Levo for a week tomorrow, and this article states that there is no proof that combined these meds work. Well, let me tell you for me, they don,t I have had pains in my chest, feeling sick, and joint pains!!!. I,m a CFS sufferer, and have been lucky to not have had the joint pains (well I have had them in the past, but you could count the times on one hand), so Im giving T3 until the end of week, and if I still have these systems, I,m going to stop taking it. As this article also says that doses of Levo have been reduced in patients with a high TSH, but this reduction has not necessarily made the patient better - and I truly believe this, as my GP (rightly or wrongly) reduced my Levo to 100mcg from 125mcg in July last year, and that,s when my fatigue got worse. Mind you there is something not quite right with my Kidneys now, my tiredness could be one of three things!!
I,ve made an appointment to see my GP and im going to ask if I can go on the 125mcg again perhaps increasing it to 150mcg.
T3 is most definately not agreeing with me, I know it,s expensive as well, but I don,t think it,s the wonder drug I thought it would be. Thanks to all on this website for the info provided, it is such a help. Best wishes,Kath x.x.x
When I first went on to levothyroxine, after diagnosis by the GP, I suffered sharp and severe pains in my chest at very odd moments and which took away my breath with the sharpness of them, and made me gasp. I persevered with it as I was so afraid of being taken off the medicine, as the good effects were improving my life even though the pains were frightening me. At about 6 weeks I got a day of palpitations which I spent in bed scared ! After this day the problems went away and I was just left with an improved life.
I handled this really badly due to not knowing how to deal with the problem and if I got this now I would know it is due to too much too soon of the medication and would handle it as follows. I would stop the medicine for one day, and the following day I would begin again with a reduced dose and then build up very slowly so my system could adjust and learn to cope. You can cut the pills in half or even quarters, even make dust by pressing the tablets between two teaspoons and take a tiny part for a few days until you think your body can accept an increase. The medicine is a shock to the body that has been underperforming for so many years and you must be considerate and not shock it by revving up too quickly.
Thank you for replying, I hear what you are saying, and will reduce the 3x 10mcg T3 I take a day to 20mcg see how I get on. Once again thanks, Best Kath x.
Kath, I am just completing my second week on T3 (it'll be two weeks on Wednesday). I was on 200mcg T4 and my Endo reduced T4 to 150 mcg and added 20mcg of T3, split into two doses. For the first two days I had an incredible banging headache and not exactly palpitations, but an awareness of my heartbeat and the occasional quite severe thud of heartbeat. (If that makes any sense). For the remainder of that first week, I split the 20mcg tablet into 4 and spread them out as I reckoned that the split dose of 10mcg was too much for me to cope with. This past week I have been able to tolerate the two 10mcg doses without any problem. I am feeling better, have a wee bit more energy and have lost weight (so far, so good!) Obviously I'm not a doctor, and we're all different, but just thought I'd let you know what worked for me, and as your dose is larger than mine, splitting might work for you. Best of luck! Karen x
Thanks for that Karen. I,m splitting my 3x 10mg a day, I take one with my 50mg of Levo, when I get up, and try to take the other 2 doses with food. Like you, ive had pains in my chest and feeling sick, but it could be that my system is getting used to the T3. I am going to give it a few weeks, see how I feel then. It would be great if I could shift some of my weight!! Will let this site know how I progress. Best wishes, Kath x
Dear Kath,
I was diagnosed with CFS. Don't believe I have ever had it - just poorly managed hypothyroidism. Not even sure it actually exists (perhaps controversially, I believe CFS is a collection of symptoms from underlying disease pathology that dr's have failed to recognise and therefore treat adequately).
Prior to this illness I was a Nurse, working for the NHS for 16 years...
I was on combined treatment for several years (T4 / T3) having been on levo alone for about 2 before that. Its only since I have taken LDN (decided to self treat after 6 years of incapacity) last June (which is actually healing my thyroid which was almost completely destroyed by antibodies - and now is 60% functioning again according to a private blood test I paid for) and T3 alone that I am getting better.
1 week is definitally not long enough to discount the T3 as beneficial. T4 is a storage hormone and needs to be converted by the body, not all of us can do that...also have your adrenals been tested by a salivary cortisol profile? Long term poor thyroid management damages the adrenals...and could account for some of your remaining symptoms...I did and discovered too high cortisol in the morning and too low cortisol output for the rest of the day into the evening...
You also need to understand how these drugs work to make a clear informed decision about your care. GP's it seems don't know enough and Endo's (at least the ones I have seen) seem to have too simplistic a view on thyroid management...TSH it seems, is the primary the influence - rather than elimination of symptoms, and, if your bloods are 'normal' according to such dr's, the remaining symptoms are down to something else, in my case CFS (and perhaps yours too)....I have found experientially this is absolute rubbish....for the first 3 years of my illness I was far too ill to even research this myself...
Educate yourself would be my suggestion and then you can be better informed to take more control over your care...
Good luck!
Interested to read what you wrote here. Similar situation for me regarding diagnosis of ME/CFS with thyroid antibodies present and I agree with your theory on CFS. Very interested to hear about your LDN use - did you start to feel benefits quite soon after starting? Were you able to tolerate it easily?
I've tried LDN too but felt awful after a week - couldn't get beyond blinding headaches and didn't want to end up stressing my body with a cocktail of meds to control side effects.
Do you have a view on what might cause the antibody problem?
Good article posted by Isis too - a wider occurence of non-dismissive views by health professionals would certainly be a good thing, and more reliable clinical tests of course.
Cheers, Andy
Hi Andy,
I will try and make a very long story short...
I found out about LDN about 2- 3 months before I started it, researched it thoroughly and was impressed enough to give it a go. Asked Dr's at my practice to prescribe it and they wouldn't and I realise that was fair enough but I explained I was prepared to get it and try it anyway and would they be so kind as to be prepared to monitor my thyroid function and do baseline thyroid function tests....and got a resounding NO. Couldn't believe it and actually felt quite upset as nothing else had worked...and after all I was taking responsibility for this treatment...and it is my body and life at the end of the day...
I didn't let that put me off, but was concerned I could be unstable and then what would I do...? I know 'most' patients with hashimotos report needing monthly bloods and reducing their thyroid hormone replacement according to response / blood results...I figured blood tests hadn't helped me so far and so going on how I 'felt' seemed much more accurate...
I started the lDN at 1 mg and felt terrible the next day, so reduced to 0.5 mgs...then after 3 days I went hyperthyroid...so...I basically responded to LDN in 3 days (fastest responder according to Dr Tom Gillhooly who got in touch via the compounding pharmacy when he got to hear about what was going on - to support me via telephone).
Anyway, initially when this rapid response happened I contacted the compounding pharmacy and they said I would need weekly bloods. I said thats not possible due to the lack of support from the Dr's at my Gp practice. I was then advised to come off all my thyroid drugs and 'go blind' as its so dangerous to go hyperthyroid...(I was on 100 of T4 and 20 T3)
I actually started to feel great after about 5 days (when the raging heart rate began to settle down)...then after about 10 days (beginning of July) I began to get terrible palpitations....and anxiety / panic attacks so severe I was admitted to hospital...TSH was 42, T4 6.0 (12 - 22) and T3 3.1 (4.0 - 8.0 approx) after 1 week / 10 days of stopping the thyroid drugs...
I was advised by the hospital (in their ignorance) to stop taking the LDN and recommence my earlier treatment, I felt instinctively that wouldn't be a good idea (and I had seen the discharge letter and it said my TPO count was only 38!)... I basically persevered for several months while I was in this hypothyroid hole, I managed the raging anxiety and palpitations with propranolol and small amounts of diazepam for 2- 3 months while using T3 and titrating it up to manage my hypo symptoms, working out by how I felt how much I needed. I did reintroduce some t4 as well initially, but found that many symptoms actually returned on this therapy (which explains why I actually felt generally better with a TSH of 42 off all t4 meds - interesting huh?)
Over the months my T3 requirements have come down from the 45 mcgs day in divided doses I had titrated up to, to now just 20-22.5 mcg in 2 divided doses (generally 12.5 in the morning and then 7.5 - 10 mcg after lunch) and I recently had a blood test privately that I paid for in India (so the reference range is different). As as result of this test I discovered that my thyroid is working again - as the t4 was checked and as I am not taking any t4 meds it has to be intrinsic...the T4 was 7.8 (ref range 4.3 - 9.2 approx) THIS IS AMAZING!!!
I remain on LDN and take 3.25 mls at night...maybe in another 6 months I won't need any T3 at all (or just a very small dose)...fingers crossed....
Anyway, I have to say its been a very bumpy and scary ride. if I hadn't been a nurse and known how to use the drugs to manage my condition (which largely was trial and error and going on my vital signs and responses due to LDN being experimental) I am not sure I would have made it through. A supportive GP is essential....I am however very glad I was brave (stupid enough) to do this as it seems that I am at last getting well....
Body is still very weak after 6 years of profound incapacity, but I feel that the remaining symptoms / effects are as a result of the body being sick and inactive for so long and so slowly need to build up my stamina (and maybe some underlying adrenal insufficiency that I am treating with high dose vit c / other things - am going to repeat the salivary cortisol soon to see how things are progressing)...needless to say I have changed my GP practice from those awful doctors I was previously registered with (there was a whole host of other things I could have gone into that happened there but its not important now)...
I am happy to send you the info sheet on LDN that the compounding pharmacy sent me as they sent an electronic copy to me last week - if you can let me know your email...also happy to share more if you think it would be helpful...
We have to take control of our health and be proactive I have found...otherwise you can be left dangling for years...T4 is rubbish for many in my humble opinion and seems to effect the TSH levels (without necessarily being converted and getting to where its needed)...LDN in my experience is simply amazing, its allowing my own thyroid gland to recover and renew itself.... I am so, so grateful I tried it...
Here's to health, happiness and wellness!!!
I was also going to say, some experience side effects after initially starting LDN (like an exacerbation of their condition) for a few weeks before symptoms begin to settle...we are all different in how we respond...
In my experience its definitely worth it. Can't you take paracetamol or brufen to manage your aches / pains initially until things settle down?
whats worse, a few weeks of increased discomfort - or maybe a life time of illness...
I know what I would choose...
Hi kk,
Thank you for writing and sorry for my time lag.
Your story is inspiring and daunting in about equal measure!!!
Regarding NDT i got the prescription easy enough with help and support from campaign HQ (LDN Research Trust) a few miles away from me in Buxton - Linda was great.
She was great help and support but I didn't find the prescribing GP to be helpful or available, he never responded to any of my email queries, despite the ongoing fees I was paying him for the 'consultation'.
I gave up in despair at the time as I felt so unwell with it. Other folks have suggested that candida issues may play a part in blocking efficacy of LDN treatment.
Your case really is very inspiring to me though as I do believe in the idea of healing the autoimmune problem and that will then allow thyroid to recover and function correctly. From that perspective LDN seems like a better answer than thyroid supplementation.
But then I wonder if we are turning off some kind of natural body response (no matter how bl**dy inconvenient and sickness causing it might be - i.e. the autoimmune response) would we then be damming up a problem somewhere else?
I am inspired and considering to try once more having read your words. Currently doing nutri-thyroid + other supplements + probiotics for a while now and seeing if that helps restore some immune balance and keeps me going for now at least.
Thanks and best wishes, Andy
You're welcome Andy. If you need support, I would contact the compounding pharmacy - dickson's in Glasgow. Its important to remember that these GP's (that prescribe LDN) are sticking their neck out and putting their career on the line to help us. They probably prescribe for many, many patients - as well as being a GP...not always easy to keep on top of correspondence (although in an ideal world...)
My attitude is, I have been sick for a long long time - am I going to get better quickly - or is it going to take a while for my body to adjust? Probably the later, stick with it (and look at other things like diet, pacing, rest, vits / supplements, adrenal function) and I am sure things will improve,
Good luck!
Karen
Thank you so much for your correspondence. I was diagnosed with ME/CFS in 1996, having had loads of blood tests, for Thyroid, Lupus you name it!! Then 5 years later was diagnosed with underactive Thyroid. I think its a mine field getting meds right, and I think you just have to listen to your own body. Perhaps a week on T3 isn,t enough, so might give it another week, but if I keep getting the pains in my chest and sickness, I,m definately not going to carry on with it. I,ve also read that my Bezafibrate that I take for my High Blood Cholesterol, is not suitable for Hypo people - crikey, I seem to be in the middle of the devil and the deep blue sea!!! It,s going to be trial and error, will let this site know how I get on. Thanks again, Best, Kath x
Well put, I think you are right about CFS a doctor
Said to me it's what we call it if we can't prove
It's anything else and the symptoms remain but essentially
It's a made up disorder in his opinion. I was concerned
As I felt patients may feel at last I've been diagnosed with a
Condition when I'm fact it may not be taken very seriously.
Thanks
Seems like the reduction in Levo has had negative effects and like the abstact says perhaps your GP treating by numbers on a lab report not treating you as an individual. Must be really disappointing to find that T3 does not work for you and truly hope your GP will investigate further and find the cause and solution for symptoms. Good luck with the appointment.
Isis x
I found it a great benefit when T3 10mcg was added to a reduced 50mcg T4. I got improved so much when I dropped the T4 and went onto T3 alone.
Research has been done on patients and the combination of T3/T4 worked better than levo alone.
See extract below.
Im going to give it another week, so what I think, perhaps im abit premature in only giving it a week. I,ll let your know. Kind regards, Kath
I'm printing this off and giving this to my gp. What an excellent article, thank you so much for sharing this with us. X
Please note that hair and eyebrow loss does not feature as a symptom on any of the tables. Hair loss in one form or another is a MAJOR clinical sign of hypothyroidism.
shawsAdministrator
I haven't read this article yet but for years Dr Lowe made this statement:-
Regarding your dosage, keep in mind that the point to taking thyroid hormone is to normalize tissue metabolism. Unfortunately, blood levels of thyroid hormones and TSH are not measures of tissue metabolism. They are an assessment of the interaction of the pituitary-thyroid gland axis, and nothing more. (This assessment is helpful in diagnosing an untreated patient's thyroid status. It is, however, useless as a gauge for adjusting dosage.) There is no good evidence that the blood levels of these hormones correlate well with tissue metabolism. Because of this, if your goal is normal metabolism, the "optimal" blood levels of T3 and T4 must be determined on an individual basis. This is accomplished by adjusting your dosage so as to provide optimal health without tissue overstimulation. Imposing a predetermined blood level on an individual patient usually results in a poor clinical outcome. The only effective method for most patients is for the clinician to abandon the blood tests altogether and adjust the dosage according to measures of tissue metabolism.
A very helpful article for most of us, if only our GP's will take notice. I shall try and get them to!
Good Luck x
shawsAdministrator
This is a Rebuttal to the British Thyroid Association and the Royal College of Physicians which they ignored. It was by Dr Lowe, scientist (Thyroid Science), logistician, Director of Fibromyalgia Research and Adviser to Thyroiduk.org before his death because of false statements.
thyroidscience.com/Criticis...
Page 2 and 3 are very interesting.
Hmmm... the most telling quote is, I think this:
"“Unsympathetic dismissal” of symptoms is therefore, unwarranted and incorrect."
Not what you're looking for?
You may also like...
Unhappy Levothyroxine user
i am seriously thinking about coming off my Levothyroxine as I have been fighting a loosing battle...
Blue Horizon gene results came with this advice...? No mention of B Vit's for hypo's
I was surprised to see no mention of B Vit's for Hypo's?
Why Are Our Hypothyroid Patients Unhappy? Is Tissue Hypothyroidism The Answer?
This is an article from the Indian Journal of Endocrinology and Metabolism from 2011. It would...
Please help - Hair Falling out, Fatigue &bso unhappy!! Been told to take Thyroxine but I am so worried, Can i take natural vitamins instead
Please help...
I had a blood test last year around this time and my thyroid was fine....
DEXA scan result Poor. What to do about T3? Endocrinologist unhappy with suppressed TSH even before DEXA. How do I advocate for myself now?!
