You all have so much knowledge maybe you can help. I am actually on the BHF website because I had a massive heart attack July 1st and 2 stents, anyway I am on here as I am at my wits end with my poor husband. He has just turned 50. He is at the point of a breakdown. He has gone from being a fit active policeman 20 years ago to someone who cannot crawl to the car. we have run our own small business and I have watched him go downhill year by year. here is where I need advice. He is so tired and breathless he cannot walk up slopes or steps. He cannot carry anything and can barely run the business. His stress levels are off the scale as he is the breadwinner. He is pale tired weak and his mood ranges from tearful to rages. I am convinced it is either cardiac or thyroid. He cannot get a cardiac appointment so I begged the doctor to test his thyroid. These are his results. They look ok to me, but his folate was very low at 2.0 ug. These results look to be in range. Have any of you an opinion. All his other tests were in range and he seems to be not diabetic even if he lives on sugar for energy. Help ?? any suggestions ?? Are these normal ?
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Sootycat
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Although your husband's results are in range, they do suggest a problem.
A normal, healthy person would have a TSH of no more than 2, often around 1, and your husband's TSH, in that respect is good.
A normal, healthy person would generally have an FT4 level around mid-range-ish but as none of us are tested in health for a baseline, none of us know what is normal for us. However, your husband's FT4 at 9.4 in a range of 9-21 is just 3% into the range.
I am not medically trained, and I am not diagnosing, but what could be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
In Primary Hypothyroidism, which is where the thyroid fails, the TSH will be high.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason so the message isn't getting through to the thyroid to produce hormone, hence low FT4. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before.
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:
You could do some more research, print out anything that may help and show your GP.
Your husband may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email ThyroidUK at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos (the office is closed until 4th January). Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
Thank you so much for that. Every word duly noted.You must actually be psychic !! as 10 years ago he was diagnosed with pituitary insufficuancy and literally no testosterone. His testosterone is still so low its not on the scale, he cannot take it even by gel form as it affects his depression and anti depressants. Nothing was ever done other than put him on citalopram as he has no seratonin and bye baye that was that 10 years ago. Still not sure what to do. In fact I just put Xmas lunch phots on where all the comments were he looks so ill. He is black under the eyes and white as a sheet and is very visibly unwell. I am at my wits end what to do as cannot see a Doctor and have begged and cannot gget an appointment at our local hospital saying they would not see him as he is obese. He was distraught when he received the leter from the hospital. He is 6ft and weighs 16st 10 and is not obese. The cynic in me says they are trying to keep their waiting lists down. What to do next is just beyond me. I would pay for an angiogram but I cannot refer myself. After my heartattack and stents I am just not as strong or fiesty as I used to be. Thank you for your response xxx
PS. It was actually Endos who say (in writing) they refuse to see him due to his obesity. I nearly took the letter to the newspapers but then didnt want to look a fool.
Unbelievable that they can say they are refusing to see him because he is obese.
10 years ago he was diagnosed with pituitary insufficuancy
Are you with the same GP now as then? If so remind the GP of this and it's significance where Central Hypothyroidism is concerned
Who diagnosed the pituitary insufficiency? See if he can be re-referred to the same people as this might be one way forward.
However, if you can budget to see a private endo I think that would be the best thing to do at the moment. You can send for the list of private and NHS endos from ThyroidUK (email address above) but as I mentioned before choose carefully as most are ignorant of Central Hypothyroidism.
Ten years ago he saw a neurologist and it was the neurologist that ordered the brain scan and the tests. he was meant to be reviewed 5 years later but never called back. I just paid for him to have a liver MRI as he has NASH and a brain MRI. The results are not too good. He has a herniated pituitary white matter and ischemic changes as well as a high signal on the left parietal lobe. Our Doctors were quite shocked we did this and we are trying to get a referral. It is all very confusing and all tied in together somehow but need professional help. After 17 months unable to work firstly due to restrictions then he feels so ill most of our savings have gone. But I will pay for anything if I have to sell my soul. (ok bit dramatic but at end of thether)
We are near Glasgow.The local hospital where he was referred have cancelled his appointment and refused to see him saying his problems are due to his obesity. 16st is overweight but surely not obese enough to not see him in the whole hospital. His ferritin was low. I bought him some folate but it seemed to make no difference.
I give him 1000 mg daily omega 3. D3 and thats it oh and Vit c 1,000 when we remember that one. I am open to and grateful for any advice thank you xx
Other issues aside I can tell you with folate that low aligned with low ferritin your poor husband will be absolutely miserable speaking from experience.
Folate can take a while to raise as can ferritin so it's not a quick fix.
I'm in Scotland and could recommend an endo that you could see remotely and another one perhaps face to face? They are both on the list that slowdragon is referring to but I'm not sure how au fait they are with central hypothyroidism.
Yes please. If they will see us we will travel anywhere. We just went to Newcastle for the MRI's so anywhere in the Glasgow area would be good, but we will travel further.I would be most grateful for the suggestions.
Also so sorry you are not getting the best health care - well actually none at all it seems. However this is a great place to get support and wishing you both all the best...
Your poor poor husband! I cannot imagine how rubbish he feels. Personally when things are off with my meds, I'm very ill, unable to walk, carry a bag of shopping, think, or speak properly and stuck in bed with low neurotransmitters which leads to disordered thinking and wanting to die, so your husbands plight has really struck me and I at least have a functioning pituitary gland! The hospitals response without even seeing him is rather ignorant particularly as anti-depressents have weight gain as a very common side effect.
SlowDragon has told you everything you need to know, but on the subject of folate I have recently started taking the Igennus B Complex (you can get from Amazon or their own website) and I felt the difference immediately. I was quite surprised. I had taken folate before and B complex before, but this one has made a subtle but real difference to my mental sense of wellbeing. Maybe because it's pre-methylated. I take two tabs daily both at once.
Vitamin D with K2..... I was instructed by my private doctor to take no less than 5000iu a day. I couldn't afford his recommended brand and instead take 4000IU Vitamin D3 & K2 - 365 Vegetarian Tablets/Capsules by Project Nutrition from Amazon and take two extra capsules at weekends. I take same time as fish oils. My vit D was below the range (50 - 200 or there abouts) even with taking 1000iu a day. Tested last week and it is now over 120 so it works.
I also recommend slow release Vit C in high doses because his adrenals will be really struggling. The vit c has to be spread throughout the day.
So sorry you are both going through this and hope you can get some professional help soon. I would write a stiff letter of complaint regarding the dropped appointment to the department of the hospital he was meant to be seen in. It's something I've had to do before and it often works. I have always had a response. Failing that Pals. Utterly ridiculous.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
I have ordered the D3 and k2 as well as B complex in the brands mentioned. But money is pretty low right now.I will find his test results from May as this time they did not do his folate or D.
But they were very low before. I will return with info.
I’d start him taking a good folate. And if you can afford it get the Well Man tests set at Medichecks - it also includes T3 which is the missing measure on your results above and shows the level of active thyroid hormone - plus testosterone and other vits. Looks very like central hypothyroidism but get complete picture.
I am overwhelmed at the help and advice on here. I will try and look into this tomorrow but I'm guessing everything will be closed till New Year. I will come back with news.
Agree with the above. I would get b12 tested ASAP and share the results - most GPs are very poor at treating b12. A good intro and symptoms test for b12 can be found at B12d.org. Good luck.
I agree about the need to check B12 ASAP. Supplementing either folate or B12 isn't a good idea until you have got a better handle on the B12, which could be causing or contributing to many of those symptoms. Best wishes
Spot on. It is hard enough anyway, so don't need anything to obscure it even further. Do you know what is causing the pituitary insufficiency - in case it is the lack of B12 eg b12d.org/overview/endocrine. Might be a poor methylation issue (so lack at cellular level, even if bloods not too bad or even high) - COMT or MTHFR, both very common, could be throwing the neurotransmitter balance, so some magnesium may be beneficial (as always, start gently - oil spray on skin is easily absorbed eg Better You) and after the B12 test maybe a low, and I mean low and slow, trial of methyl(tetrahydro)folate nutriadvanced.co.uk/news/do.... Cheers
I got him Folate and magnesium. But after 6 weeks he just gave up as he felt just the same. The shaking and dripping with cold sweat alarm him and it does not help his rather fragile state of mind.Hi often has to change his clothes 3 times a day then he gets embarrassed. He gives up.I will try and get these tests ordered then try him again on the folate magnesium d3 k2 and B complex.
Some good advice here re thyroid, obviously connected to your husband's past findings. However, some vitamin and supplement recommendations are not advisable in the case of his NASH diagnosis. I hope he has been seen by a hepatologist, although in our experience this is not always the case. Your husband's sugar intake will be having a detrimental effect on this condition, which can often be slowed down with the correct diet. Has your husband had a liver ultrasound or fibroscan? These should be regularly done to monitor his NASH. As you are on HU, I would recommend joining the liver group here if you have not done so already. It is an amazingly helpful and supportive group, with a line to the nurses at the British Liver Trust. I do hope you can get things sorted out for your husband, and you must also take care to look after yourself, too.
Thank you. I did not know there was a Liver section on here. I will look immediately. His NASH was diagnosed about 5 -6 years ago and he has never been seen since. He had a fibroscan and couple of other tests. They said no scarring but very heavy infiltration. He had lost the use of about 20% of liver to memory. They said no medicine so change lifestyle. He also has reflux and erosion.Very difficult as he was then very active working 3 jobs and 60 to 70 hours every week. He walked miles and we don't eat processed food. In the end I had to nearly starve him to lose 2 stone but it just goes straight back on and he is too tired and run down to walk now. His cholesterol has gone up to 5.9 but he hasn't seen a doctor for 17 months.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Ps. I just paid for him to go to Newcastle last week for a private Mri of his liver. The results were heavy infiltration but no scarring. Gall bladder looked OK bile ducts etc. But he gets a lot of liver capsule pain and gall bladder pain if he deviates at all from his low fat diet.
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