Hi. Not sure where to start. This is for my husband. I am a googler and came across your site. I have never posted anything but read your site everyday looking for answers. Reading your questions and responses on various issues (pain especially has been very useful) so far have been very interesting and have helped a lot. This one is about his thyroid problem (I think)
My husband has terminal cancer. A brief history in case it is useful: ocular melanoma in 1989, spread to his lung in 2007 with partial lobectomy. Cancer now in his heart, pancreas, psoas muscle, lymph glands, eye and lungs.
Unfortunately one of his treatments caused a benign tumour on his pituitary so he also has hypothyroidism to add to his problems.
No further treatment for anything is currently available so we are managing his health as best we can. Obviously we want what is best so we can get the best quality of life. Considering his diagnosis he does very very well and has gone beyond everyone's expectations. He still works part time.
Generally he is well and we have his pain under control. He recently had a 'virus'? He doubled his hydrocortisone (normal daily dose of 20 mg) as suggested until he was feeling better. He has gradually come back to the 20 mg, unfortunately he is still feeling very lethargic and no energy. Unfortunately because he is terminal the hospice just blame the cancer.
However, from experience during our journey this has not always been the case. Before we start worrying the the cancer is causing the problem we want to look at the bigger picture.
He recently had blood tests which suggested he was low on iron and is currently taking iron tablets. Apparently everything else was ok.
I understand his exercise levels, mental health etc could also be a contributing factor.
He is under oncology, endocrine, gp and moorfields eye hospital. Unfortunately none of the departments speak with one another and only treat their area. Without sounding too pessimistic, because he is terminal they are reluctant to invest to much time and money in his condition and just increase his morphine. (He was on a lot of morphine for pain but because of what I read on your site he now does not take any morphine at all). Can it be that the symptoms and meds are getting all mixed up and causing there own issues?
Can anyone please please make any suggestions about what to do next? It maybe that I am in the wrong area for discussion???
Thanking you for any help or support.
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Nee22
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Not sure if I am being helpful in suggesting this website - The Truth About Cancer. I have their Newsletters and try to absorb the information 😴 There always seems to be something that catches my eye !
I am not a sufferer myself but have family members who have cancer.
Thank you for your best wishes and your time in responding. I do actually flit in and out from this website. I agree there is always something to catch your eye.
My husband is on the diet (he's lost over 2 stone) and was talking about the benefits regarding cancer. Interestingly a relative has recently passed (he was 89) but was diagnosed skin and lung cancer in 2004 which he probably had much longer but he would never attend a doctor. He was an exceptionally fit man who had a simple diet. He always seemed to bounce back after every instance of cancer growth or tumour.
First, I am extremely sorry your husband has had such a diagnosis and he is very brave (as you are) in doing his very best in extreme difficulties.
Ask GP to test his thyroid hormones. The usually only do TSH and T4 but ask for a full thyroid function test which is TSH, T4, T3, Free T4 and Free T3 and thyroid antibodies. Doctor (or lab) may not do them all but ask anyway. If he's not had B12, Vit D, iron, ferritin and folate ask for these too. (If you have a private test GP should do the vits/minerals.
The test should be the very earliest possible, fasting (he can drink water). These also can be done privately which means a home test and I shall give you the recommended labs below:-
The GP is very supportive, we recently asked for them to do tests. He recently had a vit b12, iron etc blood test. It came back he was low in iron but everything else was ok. He is now taking iron tablets. I have realised that their normal may not be 'normal' if you know what I mean.
On Monday I will ask for a copy of the results to see where he is on the charts. He maybe towards the lower end. He does have quite a lot of the b12 def symptoms. Muscle pain, very forgetful, behavioural changes, muscle weakness, tiredness, pale skin. He also has cold hands and feet, but not all of the time.
I am also conscious that his mental state could be caused through stress of having cancer. His physical state could also be through disease progression. I just want to cover all angles before we submit to the worst.
Would his GP do his thyroid tests or would we need to go to his endocrinologist. In fairness they are usually quite good with him if he asks for anything. It is that we have to make the suggestions and make the first move. I certainly wouldn't have a problem going private if that is what it takes. We would find the money from somewhere.
He is an amazing man and it is worth doing anything or everything we can. It would be a sad world without him.
The GP can definitely do the thyroid tests and test TSH and T4. However the lab may refuse to test your husband's T3 regardless whether the GP or the endocrinologist asks for it if the TSH or FT4 are "in range". This is because the NHS to save money rarely tests for T3.
Please get a print-out of his B12 etc. Never take normal as 'being fine and nothing else is needed." His B12 should be around the very top of the range which is about 800 and I wonder if it is.
You would be surprised how many clinical symptoms there are with hypothyroidism and I doubt GPs know any at all but are willing to prescribe for a symptom when thyroid hormone is required to relieve the symptoms not 'other' medication.
Will get onto surgery tomorrow for a print out and get back to you. Will be interesting?
We also have to speak with endocrine tomorrow about an appointment so will see what they can do too.
He also gets very cold. He is ok some of time but if it happens, it usually starts through the evening. If he has to get up to the loo during the night he is physically shivering. Could that be a thyroid issue? ....and if so, why only now and again?
I am not medically qualified but coldness and/or low temp are symptoms as well as low pulse. Hypothyroidism lowers our metabolism therefore we can have a low/slow pulse as well as temp. That's why we have thyroid hormone replacement to raise our metabolism and relief of clinicals symptoms. Due to your husband also having other conditions there could be a cross-over but I don't have any knowledge about them. Only that the thyroid gland would be, in layman's terms, the engine and if it slows down due to insufficient fuel it cannot do it's job properly.
You will see there's quite a few symptoms on the following link and cold/heat intolerance is one of many. Thankfully we don't get all of these symptoms.
Still waiting on arranging a thyroid blood test, but we are on the case. However on your advise and getting a copy of his vitb12, iron etc is could be what is causing the problem. Based on your recommendations of the vit b12 reading he seems to be on the low end of normal. I have put his results below.
Liver function test
Plasma total bilirubin 4 umol/L <21
Plasma ALT level 14 IU/L
Plasma alk phosphatase level 82 IU/L
Plasma albumin level 33 IU/L
Renal profile
Plasma sodium level138 mol/L
Plasma potassium level 4.1mmol/L
Plasma creatinine level 75 umol/L
Plasma C-reactive protein - elevated but reduced on last test 37.3 mg/L
Serum vitamin B 12 204 Ng/L
Serum ferritin 77 microg/L
Serum folate 5.7 microg/L
Serum iron level 7 micromol/L
Serum transferrin 2.48 g/L
Transferrin saturation index 13.%
Any comments, suggestions or anything!!!, I am sure would be most useful.
Copy and paste your results onto a new post for comments from members who know better than me about bloods as this post is about two days old now.
I will say however that your husband's B12 is too low and needs to be towards the top of the range. The doctor needs to check his intrinsic factor (i.e. does he have pernicious anaemia) but others will respond to that as well. If supplementing it should be with sublingual methylcobalamin B12 which dissolves in the mouth and absorbed through the tongue. Usually our stomachs are compromised.
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