👋. Following an acute episode of PTSD at the end of last year I went into January feeling pretty sorry for myself. Then in the middle of January I was diagnosed with a DVT 🤷♀️. So put on blood thinners. Fast forward to last week when I saw my ( long term) GP. I was with her for 40 mins ( end of day last patient) . She was very thorough. We went over everything. Why am I still suffering crashing fatigue/ no life/ no work/ midday sleeping/ DVT? Despite 18 months on Levo underrange TSH but FT4/FT3 not high enough in range.
I burst into tears midway through and she realised how desperate I was ( she has been my GP for 25yrs and seen me through alot).
where do I start………she said she was diagnosing ME/CFS to get me to the ME centre at RUH Bath. Referral to Vascular Care for DVT questions ( I.e why?). Booked very full blood tests to look for Connective Tissue Disorders, etc etc. Here they are. There have been about 40 tests 😳. This is in addition to all the tests done when I was in hospital for the DVT. So I’m just going to list the abnormal ones.
TSH 0.02 (0.38-5.33)
FT4 13.0 (7.9-14.4) 78.5%
FT3 4.5 (3.8–6.0) 32%
this is in line with previous TFTs in Jan
Serum B12 259 no range
Ferritin 57 (11.0-307.0)
Folate 7.4 (3.0-20.0)
Vit D 97 (750)
Now for some odd ones ……
White Blood Cell 3.5 (4.0-11.00)
Lymphocytes 1.3 (1.0-4.0)
Monocyte 0.32 (0.2-1.0)
Neutrophil 1.8 (1.5-8.0)
Globulin 24 (24-41) = crashing fatigue and very low blood pressure
Total Protein 60 (60-80)
If you’ve got this far, Thankyou 🙏
I’ve only posted the abnormal results. Aside from TFTs which I realise I’m not converting well could anybody explain these other results ( I’m not malnourished 💪). From my research low Globulin would explain Post Exertional Malaise (crashing)and very low blood pressure. So I would agree with the CFS diagnosis.
Anybody with any ideas please 🙏
I will probably try some T3 either from private endo ( or my Greek supply 🤫)
Thanks 😊
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SarahJane1471
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The chances are if you get your FT3 levels higher, then much of your symptoms may well reverse. Many/most of us have been extremely unwell/bed-ridden until FT3 levels were high enough and most need their levels at least half way through range, some even top.
You really don’t want a ME/CFS diagnosis as this risks being blamed for any future symptoms instead of attracting investigations.
White blood cells are often low after years of being high driven by Hashi. Low globulins result from low proteins that can result from autoimmune conditions. Have you had kidney and liver function checked? Have you got gut issues that need addressing?
Your nutrients could be a bit higher and I found supplementing mitochondrial supports really helped my energy levels as T3 requires balanced blood sugars and protein but also many of the micronutrients to become 'active'. If you don't eat meat protein, protein powders can be helpful.
Members whose need for T3 medication has not be fulfilled by the NHS either get private prescriptions or buy T3 from abroad. Members will provide their source by PM if you ask.
Sorry to hear about your DVT. That must have been frightening.
thank you for the quick reply radd I had kidney/liver tests the day I was in hospital for DVT. All good.
I did say to my GP that I didn’t want ME/CFS diagnosed as I felt like I was going to be sidelined in the future I.E “ oh it’s just her PTSD/ME” but she reassured me that would not be the case and that the new Rheumatology Unit at Bath had all the specialists together 🤷♀️.
I’ve never had high antibodies just a rubbish thyroid. But yes low globulin and serum protein is weird.
What are mitochondria supplements?
I have found a private endo but don’t want to see her yet. I have a source of T3 from Greece and have enough stashed to try some to see if it works but worried about the already underrange TSH.
Are you suggesting ferritin/folate/B12/D all need increasing?
Sorry you are having a tough time, I have been reading about feeding the mitochondria and supplementing also how to read blood test results as mine are not too dissimilar to yours...
Have you/ they investigated your cortisol levels?
Loads of great suggestions here, I certainly condone a private dabble with T3 to see what you are missing and then maybe a referral to Gloucestershire Endo 🤞
Dr Myhill, if she is still called that now suspended? Is very much of the thinking that you have to run on a paleo-ketogenic diet and sort out your adrenals/ mitochondria before dealing with thyroid.... 🤔
She doesn't endorse her method without the paleo-keto bit...
I would echo everything Radd has said. I'm adding T3 at the moment after 9 years being housebound. The NHS just hasn't recognised the importance of T3 levels yet and your FT3 is too low.
Without a range for B12 its hard to be specific but it does look on the low side. Are you vegetarian/vegan?
Your folate is too low. 20 is a much better number.
Ferritin not too bad but could be improved to 90-100 with eating chicken livers or pate.
well I have two options for T3. I’ve found an Endo nearby who others have heard good things about but my GP said it would be a battle with ICB to get funding for T3 even if Endo recommended it. And I can’t really even afford to see her let alone the cost of private prescriptions. OR I have a supply of Uni Pharma from Greece ( my friend travels there frequently and buys it for a few Euros a box) which I could try to see if it makes me feel better before spending money to go private and the battle for funding. I’m just in a total quandary about what to do 🤷♀️.
If I take the T3 I’ve got do I tell my GP what I’m doing? What would happen to my already underrange TSH?
It’s all a bit terrifying to be honest 🙈
I’d appreciate anyone’s opinions on this dilemma 🙏
A call to Roseway labs in London costs £30 and then a prescription for 3 months supply is £75. All legal and above board, you fill in a short form, send your latest blood tests and have a talk to their prescriber.
Thankyou. Really appreciate your reply, I have a “supplier” for Greek T3. All above board. I have about 8 months supply ( depending on dose) . Just worried what would happen to my already underrange TSH 🤷♀️
Ah that’s good. Yes a fine balance and easy to get it wrong. I’m so sorry to hear that you have been having such a tough time. Hopefully easier times ahead for you 🌱
where do I start………she said she was diagnosing ME/CFS to get me to the ME centre
I really have a lot of doubts that will help you in any way whatsoever. The general form of treatment offered for ME/CFS is CBT which is aimed at getting you to believe that you aren't ill, and also encouraging people to exercise. The doctors/therapists in Bath are at the centre and are some of the originators of this crappy treatment.
Another possibility is that you might be encouraged to pay to do a Lightning Process (LP) course. The main purpose of this treatment is to make you lie to yourself and to others about how you are feeling.
Note that many doctors don't like these guidelines and are still using the old ones which use CBT and exercise (specifically GET - Graded Exercise Therapy where patients are encouraged to increase the amount they exercise every week)
This might be of interest :
Title : Response to Vitamin B12 and Folic Acid in Myalgic Encephalomyelitis and Fibromyalgia
Your Thyroid Function Tests show that your Free T3 is quite low and your conversion from T4 to T3 is not good. Since T3 is the active thyroid hormone required by every cell in the human body, not having enough is going to make people feel very unwell.
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Serum B12 259 no range
Much too low. Are you taking Vitamin B12 in any form?
Have you ever been tested for Pernicious Anaemia (PA)? I think it would be a good idea to get tested if you haven't. If you do get tested it is important not to take B12 / folic acid / folate supplements before testing. You can get more info on PA from the PA Society forum here :
It is usually suggested that people with thyroid problems need a ferritin level which is 50% - 70% through the range. Before taking any iron supplements though, it is a good idea to get a full iron panel done. It is perfectly possible to have a low ferritin and a high serum iron. If this is the case then taking iron supplements may just raise your serum iron beyond a healthy level and leave your ferritin at a low level - so getting an iron panel checked first is essential.
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Folate 7.4 (3.0-20.0) 25.88% through range
We suggest optimal is in the upper half of the range i.e. 11.5 - 20. The best supplement is methylfolate because it is the active form of folate and requires no conversion to be useful to the body (unlike folic acid).
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Your vitamin D is fine. You could raise it a little if you wanted to, up to about 125, but that is up to you.
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I can't help you with your White Blood Cells, but this link might be useful :
Globulin 24 (24-41) = crashing fatigue and very low blood pressure
Total Protein 60 (60-80)
Globulins are proteins, so I have always assumed these two tests are related in some way. The fact that they are both bottom of range suggests that might be true, but I'm not sure. I think globulins might be a subset of Total Protein.
These two bottom of range results could suggest a liver or kidney problems or you are malnourished and you need to increase what you are eating or eat more protein. Or possibly you aren't absorbing food very well. But I suggest you research both globulins and the total protein test.
I think GET has been stopped now and it’s all about “pacing”. But yes I’m with you on CBT thing. I’ve had many many years of CBT for my PTSD. I can’t see how “telling” myself I’m well will stop me feeling like crap everytime I exert myself 🤣
I will read all of your links and I will start the supplements if my GP doesn’t help suggest further testing The globulin is part of the protein test but I’m definitely not malnourished, I eat a healthy non vegetarian diet.
I think GET has been stopped now and it’s all about “pacing”.
Yes, I think that is true. But doctors still encourage people to exercise more "if they can". Whether they are still trying to make people do GET could be dependent on the words and phrases they use.
It is just taken for granted in modern medicine that exercise helps everyone. I'm sure exercise helps some people, but saying it helps everyone is a stretch into wishful thinking, in my opinion. And there is no proof of it.
As for exercise, four years ago a was a fit healthy size 14 who walked 4 miles a day cross country and cleaned private house 2/3 hours a day. I’m now a size 18 blob desperately wanting to get back to my old exercise/work and can’t see any amount of CBT/CET getting my body to start working again but I will go along to see what their ideas are 🤣. I’ll report back.
I’m not giving up on myself or my physical health yet.
I think that the CBT/GET treatment is a waste of time and its only purpose is to save money and to blame the mental health of the patients for their own ills.
I agree wholeheartedly but it may be a way to an Endo. Otherwise it will be a year on the NHS. There is still the option for me of a private Endo but I’m loath to pay out when I have some T3 to try already 🤷♀️
if the CFS/ME service show any interest in any sort of actual clinical testing/ bloods / brain imaging /optimising treatment of pre existing hypothyroidism /vitamins etc etc etc ...then all well and good .
but if the only mention or acknowledgement of your hypothyroidism (and its treatment) is the form they sent the GP asking about co-morbidities... and the GP sends then your latest TSH/fT4 result/ Levo dose .. and they file it under {'tick' ~ dealt with already ] and never mention it again......... then treat them with a bit of caution.
i think it is entirely possible that the only significant alterations to GET protocols in many ME/CFS clinics , have been to put a line through the word 'G.E.T' and replace it with the word 'pacing'
(Pacing in the true sense IS very useful , ie "working within your "spoons " /not overdoing it/doing little and often/ setting realistic goals for the state you are in currently/ creating conditions that allow improvements to happen , rather than trying to force them )
I was given a plan to follow that wasn't strictly G.E.T , ie not on a running machine in a clinic etc .. but the basic principle was 'find your baseline of activity (one that doesn't cause PEM and then only increase that in an extremely controlled /limited way .. if an increase causes PEM go back to previous level and try again later.... kinda thing .
But whatever it's called , the principle was still clearly ~ "you are just de conditioned , gradually increasing your ability to exercise as your overall fitness improves ( and get rid of your incorrect belief that there is something wrong with your body ) and your 'problem' will gradually go away'...
which might work if being deconditioned from lack of activity is the' only' problem ... but for me it wasn't ,, and it didn't ......and anyway i'd already considered that possibility and had tried the 'gradually get yourself fit again' method for myself ~ long before i even mentioned a problem with PEM to a GP... the reason i mentioned it to the GP in the first place was BECAUSE this approach didn't work as it should have if i was 'just deconditioned'
and in fact my PEM problem problem STARTED when i was very 'conditioned' and very fit.
The whole "G.E.T/ g.e.t by another name" idea, seems predicated on the assumption that all CFS me patients only get PEM because they have become deconditioned due to being inactive for ages ( and probably overweight too), and because they are telling themselves there is still something physically wrong, and panicking about it when their unfit heart rate goes up a bit on a walk. .. and so it assumes that if you fix the deconditioning gradually enough , the problem will not exist anymore. That was not my experience ....i wasn't deconditioned in the first place .
They seem to have no idea how to deal with some one who is a healthy weight , fit enough to a physical job one day , and not the next , and isn't panicking about dropping dead from a heart palpitation or tinnitus (and has hypothyroidism) .
i was given an exercise programme that involved "find your base level ~climb just two steps then go down again and then rest for 20 minutes. do that 10 times a day ~ do that all week and if no PEM, then increase it to 5 steps ..... Don't do more than that, and be consistent every day"
if anyone can tell me how to "not do any more than that" when you have to go all the way upstairs at least 4 times before 8 am in order to get a kid to school with it's P/E kit intact and it's teeth brushed, and then drive it to school ~ before you do your limited daily exercise routine ....i'd be intrigued to hear it.
So by all means , see what they have to offer .. i'd definitely go because you never know what might come of it , but I hope their interest in 'real' clinical issues has come on a bit since i went to a CFS/ME service ...
Obviously you were supposed to get up and levitate downstairs and then stay there all day. And in fact why were you not just sleeping on step number 5 in the first place? Why did you assume you could go upstairs to bed like everyone else?
They also failed to explain how i was supposed to get to the top of the thing i was making at the time , without going up more than 2 steps... i sooo wish you'd been around to tell me about the levitation method earlier ... is there a book on it ?
i didn't make the dome , i agreed to make a cover for it .. it was bit bigger than i expected .. had to go and have a stiff drink when it turned up lol... can't remember what they were using it for , something to do with wonky donkeys at festivals
That's the problem with thyroid problems and "?m.e. or not?" problems ... so much looks normal from outside ...... but i seem to remember it took me 4 months to finish it ~ when it should have taken 4 weeks .
tattybogle thank you . I hear everything you’re saying and agree. My fitness has always been excellent but the PEM now is crazy!!
I’m only a size 18 BECAUSE I can’t get ( no pun) on with my life which used to be active. I’ve never had to worry about my weight ( 5’8” size 14) now just wandering around a field behind my house leaves my wiped out and on the sofa. Low BP low pulse. My body just won’t do what my brain wants to. If I get to see specialists I’m all for an ME/CFS clinic. We shall see what happens.
I’ve just received an appointment for Haematology…… in April!
they do seem to get 'chicken and egg' the wrong was round don't they . B because A .. not A because B
i really hope the waiting list isn't as long as mine was to see your CFE/ME lot ... seem to remember mine was 2 and half ............................................................................................ (years)
This is common in BPS Research into ME with loads of references to "ME Activists" and claims of ME Activists making death threats against doctors and researchers who are "only trying to help patients with ME (sob, sob)".
I haven't read of a single person who has ever been arrested for making threats against BPS people. Nor have I ever heard of someone being fined or jailed for making threats in this scenario.
they need to ask themselves why so many people who have encountered them are so extremely pissed of with them .
( presumably they already have and have blamed us for that too ?)
i just read that 'lightening' translation you linked to from Norway..... ye gods ~ it's either a pyramid scheme ~ or something doing a bloody good impression of pyramid scheme! .... i always had it in the 'too good to be true' box but had never bothered looking in to it.
it's either a pyramid scheme ~ or something doing a bloody good impression of pyramid scheme!
I think it could be called a pyramid scheme, quite legitimately.
Quite a few of the "practitioners" - or whatever they call themselves - have gone through the LP course themselves for whatever reason, and then have gone through training courses. They pay for their own courses as a patient themselves, pay again for the training courses, start their own courses with LP as the "practitioner" then pay a percentage of their profits to the guy who invented LP (Phil Parker).
I sometimes read an ME forum. I haven't been diagnosed with ME but I suspect I would be if I said the wrong things to a doctor.
I find the forum of interest because some of the things discussed there have relevance to someone with a thyroid problem or simply being a person who might need the NHS.
I too had ME branded about but it was never recorded on my medical records thankfully. When I was young (years & years ago 😁) and all my friends were reading Jackie magazines, etc, my bible was a book called 'Adrenal Fatigue: The 21st Century Stress Syndrome' by James L Wilson. I still have it and it still makes sense to me.
i don't know where i sit 'officially' .....it doesn't say CFS or ME anywhere on my notes .... ' her fatigue' and ' her chronic fatigue' are very common entries ,, but not anywhere as 'a diagnosis' per se .
but i was referred to ,and accepted by the CFS/ME service for an 18month treatment programme , but the referral was because i asked for it ... even though my GP at the time said he didn't think it was the right place for me .... and he didn't think i'd get on with them .... he was right.
And i already had an undisputable autoimmune hypo diagnosis .. so technically i suppose you could argue you can't officially diagnose M.E/CFS if there is another potential cause for the symptoms ., since it is a diagnosis of exclusion.
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High TSH but good FT3?
DIO2 and when to ask for T3
14yr old - Don't think all the necessary blood tests have been carried out
T3 increase and head pressure 
New results - grateful for any input
