I am not sure whether it was the consequence of my application of reverse psychology or my-on the whole-affable GP suddenly having an epiphany, but the last couple of telephone consultations that I’ve had, have been quite constructive. I did however have to collect all the toys that were left littered on the floor, further to our last conversation and then help him back into his pram and gently rock it back to sleep.
What put our relationship back on track was my exultation on his ability to understand my concerns and perhaps my suggestion to have me referred to a specialist may have been a tad premature, this was after I’d received a letter from the surgery informing me that there would be demonstrably no chance that the NHS would provide me with Liothyronine and my referral on that basis would be futile, or words to that effect and therefore there would be no reason to refer me at this stage. He did however allow me to increase my dosage at the time to 125 which I increased after 4 weeks to 137.5 and then 150 2 weeks later
In which case by putting the professional responsibility firmly back into the pram and the subsequent recent blood tests he has now revaluated the situation and will now be referring me-Oh dear- things you have to do, it’s all rather pathetic. Small steps but steps the same.
Now the thing is where do I go from here, he has now increased the medication to 175 and he has asked for an ECG as my resting heart rate is between 29-40 a little low…..really!
I do not feel any improvements whatsoever and in fact I probably feel a little worse, my joints and muscles hurt pretty much every day, I have a stinging sensation in my chest which has been with me since the first few weeks on Levothyroxine?
I’m going to blame all this on my parents, being as both never said live would be easy, far from it in fact on numerous occasions they would suggest that I would probably wish I hadn’t been born, I’m sort of understanding that expression a little more now.
Now would you lovely contributors to this forum give me some ideas based on the following tests results which doors do I quietly knock on and which ones to I force open with a pickaxe.
25-Jun-2021 Specific Proteins - (KT15189) - Satisfactory Serum C reactive protein level
Serum vitamin D - (KT15189) - Satisfactory 136 nmol/L Therapeutic Target > 50 nmol/L Insufficiency 25 to 50 nmol/L Deficiency < 25 nmol/L Please note in patients > 70 years old or those with known osteoporosis or osteopenia, a vitamin D concentration of > 80 nmol/L would be desirable.
25-Jun-2021
! Liver function test - (KT15189) - Results as anticipated Serum total protein 70 g/L 60.00 - 80.00g/L
Please note new reference range from 27/01/21 GFR calculated abbreviatd MDRD >90 mL/min/1.73m2 For black Afro-Caribbean ethnicity result needs to be further multiplied by 1.212 25-Jun-2021 Erythrocyte sedimentation rate - (KT15189) - Satisfactory 8 mm/hour 1.00 - 12.00mm/hour 25-Jun-2021 ! Full blood count - (KT15189) - Make a Routine Appointment
! Total white cell count 2 X10^9/L 3.70 - 9.50X10^9/L
You've given us rather too much information when copying out your blood test results, which makes it hard to pick out the important stuff. The results really need to be edited to make them easier to read.
The fact that your results suggest you make a routine appointment to see your GP given how many of your results are poor puzzles me, particularly given all the out-of-range results for the Full Blood Count.
I see from your profile that you have Aplastic Anaemia and I assume this is why the medical profession aren't telling you to make an urgent appointment?
How is aplastic anaemia treated? Do you ever get blood transfusions?
I'm really sorry 😞, would you be kind enough to advise me the information which would in the future be superfluous or is it just in the way I have formatted it?
this was after I’d received a letter from the surgery informing me that there would be demonstrably no chance that the NHS would provide me with Liothyronine and my referral on that basis would be futile, or words to that effect and therefore there would be no reason to refer me at this stage.
Given how low your Free T3 is I think the NHS and the medical profession are proving themselves, once again, to be extremely sadistic.
You could fight to be prescibed T3 on the NHS. However it could take months or years to get any or you might never get it. As you may have read on this forum, some people do get it. But how they achieve that varies and I've never fought for it myself, so I'm not the most helpful person on the forum on this subject. (And I'm a dyed-in-the-wool pessimist too.)
Sometimes seeing a doctor/consultant privately might get you a prescription for T3. The first problem is trying to make sure you don't get fleeced by a doctor who has no intention of prescribing T3 ever - so making sure the doctor you want to see is amenable to T3 is the first potential stumbling block. Thyroid UK does maintain lists of doctors - both NHS and private - who have turned out to be helpful to one or more members with thyroid disease. Unfortunately they might not react the same way to everyone, so there are no guarantees. You can look at the lists and decide who you want to see. But having done that you would have to research them first to see what their interests are. There is no point in paying to see a diabetes specialist, for example. You can also ask on the forum for opinions on certain doctors by name - but all responses must be via PM.
But the cost of T3 in the UK is so high that you'd need to be quite rich to be able to afford the private consultation, the private prescription, and the private cost of the T3 from a UK pharmacy. I certainly couldn't afford it. Before Brexit some people bought their T3 (much more cheaply than from the UK) with a UK private prescription from the EU, usually Germany. But I don't know if that route is now completely closed.
The simplest and quickest way to get T3 is online - but there are possible problems with that too. Some T3 has recently turned out to be fake or dodgy in some way. There are many scammers just waiting for members to ask where they can buy T3 (which has to be answered via PM on this forum) and they get told about scam websites where their money gets taken and they get no T3.
If you decide to do that - write a new thread asking people where they buy their T3 - check with the administrators of the forum if the links you get given have caused people problems.
Getting prescribed T3 can be done. Buying it without prescription online can be done too.
But making sure that you get the right stuff and don't get scammed along the way can be difficult. Just be cautious.
Your vitamins are fine. But I would say that if you are supplementing then you need to reduce the amounts you take. It gets to the point where you are just wasting money.
High Vitamin B12 is fine, but there is no major benefit that I'm aware of in keeping your level so high that it is beyond the level at which it can be measured.
Folate is different - people have commented occasionally on getting side effects from over the range folate, so keeping it within range (but high in range if that feels best for you) is a good idea. It is actually difficult to find out the side effects of excess folate because it seems that practically the entire world seems to think folate and folic acid are the same thing - but they aren't.
Your vitamin D level is fine, but very high levels can be toxic, so keeping it between 100 and 150 nmol/L is a good idea. Many of us on this forum need a maintenance dose of vitamin D. This is often around 2000 iU - 4000 iU per day. It could be higher in winter than summer. We need to find out what works for us.
Serum total bilirubin level 4 umol/L 3.00 - 20.00umol/L Low in range
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Apart from the Globulin level your liver results look excellent to me. But sadly, I know nothing about below range globulins and low in range bilirubin. (I'm not a doctor.)
All the above sites have a lot of overlap and duplication - but very occasionally I have found that one has a slightly better explanation or more information than one of the others, so it is worth checking them all out if you are really stuck.
I wonder if you have a very high salt diet for your sodium to be at the top of the range. Or are you told to eat a lot of salt for some reason because of your aplastic anaemia.
I would suggest that you do some reading on "control of sodium and potassium in the body".
You will get a lot of stuff about high sodium leading to high blood pressure - but I think this danger may have been over-stated in some circumstances. See this link :
When I look at my own sodium and potassium I have discovered that I feel best with both of them being around 50% - 60% of the way through the range - but I'm aware that what feels best for me is not necessarily true for everyone else.
I'm struggling to say anything sensible about most of your results because I don't know if the poor ones are caused by your aplastic anaemia or are something that can be improved by you or your doctors with the right treatment. I'm also worried about suggesting something that could be dangerous for you given your condition.
Your GFR of > 90 is an excellent result, suggesting your kidneys are in good shape. Your creatinine and urea are also good.
Erythrocyte sedimentation rate (ESR) is a measure of inflammation. Yours is well in range which is good, although the lower the result the better. On this forum people rarely quote ESR, they more often quote CRP - another measure of inflammation. I don't know under what circumstances one is chosen over the other.
My goodness me,I've been out for an hour and opened my emails and wow you have not only exceeded your very good self but my expectations, I can not thank you enough for all this information. I need to digest some of it and respond with some diligence and respect for your efforts. My aplastic anemia is a condition casued by my failing bone marrow it's around 5 to 10% cell density and the hospital are reluctant at this stage to treat me for the heamoglobin as the meds my cause antibodies which may have the potential to reject a possble transplant, however judging by my white blood count the levels are getting to the point were something will have to be done.
I have a high b12 count as a consequence of trying to give myself a lift many years ago when I was first diagnosed, it did initially but was firmly told not to do so, however when I did so strangely my heamoglobin dropped, not a great deal, but it did, so every now and again I allow myself a B12 indulgence, and I was inform that being water soluble any surplus would be washed out, so hasn't been an issue.
I have recently in the last 6weeks, supplementing with potassium and iodine, only because I had read that the iodine may have some benefits? I do however and have done over the past 12 months made a conscience effort not to add any salt whatsoever to my diet and only have what nature intends.
You must excuse but I must cut this short, but I will as Arnie would say be back.
I have a high b12 count as a consequence of trying to give myself a lift many years ago when I was first diagnosed, it did initially but was firmly told not to do so, however when I did so strangely my heamoglobin dropped, not a great deal, but it did, so every now and again I allow myself a B12 indulgence, and I was inform that being water soluble any surplus would be washed out, so hasn't been an issue.
This might or might not be of relevance to you, but you could extrapolate from it to your situation.
People who are hypothyroid tend to have lower than average blood volume, or so I've read (but can't find where).
By treating their hypothyroidism a patient's blood volume should increase.
If treating hypothyroidism (or your low B12 or your low folate or low XYZ) increases your blood volume but your haemoglobin stays roughly the same then overall the amount of haemoglobin (and other things in the blood) is lower because it is more diluted.
...
Something that has just occurred to me...
In people with low B12 their red blood cell count tends to be low (and yours is low for other reasons too, obviously).
If your B12 is low and you start supplementing, your body thinks "Hey, I can start making some more red blood cells since I now have more of one of the necessary ingredients."
Another issue with the body creating more red blood cells is that there are lots of ingredients required (but I don't have an ingredient list, sorry). If your increased B12 starts up a frenzy of red blood cell making another ingredient starts to run out. That ingredient is potassium. And yours is very low.
I wonder if your body is trying (but failing) to make red blood cells all the time because of your anaemia? If so then you may have a higher demand for potassium than most people.
In people without any underlying illness (like your aplastic anaemia), if they are low in B12 and start supplementing they can find that they start to feel awful - and in some cases that can be because they have run low on potassium. But once their body has created enough red blood cells their need for extra potassium disappears.
Some links you may find helpful on B12 and potassium :
Some links I've read suggest that potassium supplementation can deplete vitamin B12. But it is rarely mentioned that B12 supplementation can deplete potassium. I suspect (and I'm NOT a doctor don't forget) that both are necessary for creating red blood cells and that is why one can be depleted by supplementing the other if supplementing triggers the creation of red blood cells.
I have recently in the last 6weeks, supplementing with potassium and iodine, only because I had read that the iodine may have some benefits?
Iodine is worth supplementing if you know that your own level is low. But if it isn't low or hasn't been tested then I would be very wary about iodine.
Have you had your level tested? If yes, what was the result and what kind of test did you do?
The best tests are allegedly 24 hour non-loading urine tests. Some info on them :
I think the best test is from Genova Diagnostics - copied and pasted from a PDF file so the formatting is not great :
Urine Iodine Test:Specimen requirements: UrineCost: £71.00Order Code: END25Turnaround time: 5 - 10 daysIodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health. Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
I've just noticed that you say you are supplementing potassium. What kind of potassium supplement are you taking? Tablets or powder? How much a day? Is the potassium result you've listed from before or after you started supplementing?
Your below range red blood cell count confirms that you are anaemic. It suggests that you are likely to be very breathless and fatigued. Red blood cells carry oxygen around the body.
Your MCV - Mean Cell Volume - measures the average size of your red blood cells. A low level would, in most people, suggest iron deficiency. A high level would, in most people, suggest low B12 and/or low folate. But with aplastic anaemia I'm not sure what it is telling you.
The bottom five results of the FBC (neutrophils, eosinophils etc) all measure cells that are part of the immune system, but I know almost nothing about them.
Your doctors do not appear to be doing a compassionate job with respect to your aplastic anaemia. Your results show that you have a lot of out of range results that must make you feel like crap.
I'm not sure how doctors would usually treat this, but it seems terrible to me that you should just be left to suffer.
I suspect you need to buy your own T3, in which case you should open a new thread and ask for suggestions on where you can buy it. Expect your thread to be closed because posting publicly about where to source medication which requires a prescription in the UK is against the rules. Ask people to PM you.
The good news though, is that your liver and kidneys both appear to be in pretty good shape.
I should like to apologies most sincerely for the lack of alacrity in responding to your informed altruistic posts, and I truly appreciate all your efforts and I am in awe of your knowledge, but saddened because it's only as a direct consequence of how you feel now and have done for a very long time, that you have been able to collect so much information and forward this on to those that are equally unwell, but as an oxymoron I would much prefer that you didn't know any of this and you were able to just live your life.
You are a complicated and rare fellow. I don't think I can be of much help either. There is quite a lot of info out there re low T3 and acute/chronic illness, especially heart & kidney health, but mostly the conclusion is 'more research required'.
There seem to be quite a few references to low T3 explained as some kind of protective mechanism in acute/chronic illness too, called Euthyroid Sick Syndrome This may be a barrier for you, but these patients have a 'normal' TSH, and I'm assuming that is not the case with you.
I think I'd focus on effects on your heart and quality of life in your shoes.
I'm having to do use up all my apologies today as a result of my seemingly lack of alacrity in not responding to all and sundry on this forum no excuses other than feeling pretty rotten and not having the endurance to do these sorts of things as well having to endure lifes commitments of work and 4 children. I know I'm not alone!
Thank you belatedly for this information, it was very interesting and makes sense.
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Vit B12 and other levels
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