I've just joined this forum and reading the posts and filled with a mixture of emotions from despair to total frustration at what patients have to go through to get the help they need to feel well. I was diagnosed with an under active thyroid 14 years ago after at least 10 years of trips to and from the doctors with varying symptoms and being told the usual lose some weight, the cold weather will make you feel cold, everyone gets headaches from time to time, of course you would be tired and your hair will fall out you have young children and so on. Finally I went one day with all my symptoms (which at that point were many) all written down and the doctor said it looks like you might have a thyroid problem lets test you for that!
So over the last 14 years my medication has been upped to 100mcg a day, in the meantime I've still had lots of symptoms which resulted in being diagnosed seven years ago with pernicious anaemia, again I think I had this for many years before it was diagnosed. I have my injections every 12 weeks but need them much sooner but haven't been able to persuade the doctor of this. I had an ultra sound scan a couple of years ago that revealed polyps on my thyroid but have been told they are nothing to worry about? I've recently developed more symptoms as follows:
very sore tongue (scalloped along the edges)
mouth ulcers
fatigue (despite getting 8 hours sleep a night)
daily headaches
heavy eyelids - to the point of me having to prise open my eyes some mornings
olfactory hallucination (smelling something that isn't there in my case smoke)
cold hands and feet
bruising easily from the slightest knock
terrible cramp in my hands and feet
poor concentration and memory fog
abdominal problems
sore throats
sensation of lump in throat
The list goes on but I don't want to bore you, the problem is when I have my blood tested the doctor just tells me it's in the "normal" range. So I'm 54 years old, I've spent 25 years of my life feeling unwell and miserable and have also been overweight for most of that time, just after Christmas I decided that I wouldn't feel like this any more and the only way it would change is if I take control of it, do my research and fight my corner.
So off to the doctor again, more blood tests, turns out I have a vitamin D deficiency now as well as everything else but all other blood "normal", so I asked to be referred to an Endocrinologist in the hope that I might at least get to speak to someone who understands my conditions and how they interact with each other. In the meantime I visited my dentist who referred me to an ENT consultant about my tongue, I went to the appointment this week, very enlightening, he is going to investigate what he calls trauma to my mouth and why it's happening so will do a biopsy but as well as this he says it's clear that I need my B12 injections more often because of the effect it's having on my mouth (I could have hugged him!). So he will recommend to the GP that this happens.
Thank you for taking the time to read this, to be honest it feels good just to write it down and get it out there, I have some questions that I'm hoping someone might be able to help me with:
Can I ask the surgery for the results of a blood test each time I have one and do they have to provide it?
If a consultant recommends an injection more often can the GP say no?
Do you think losing over 60 pounds in weight would affect the dose of thyroxine that I now need?
Does anyone else have experience of scalloped tongue ( I read an article by one consultant in America where he said "scalloped tongue screams under active thyroid")
Is vitamin D deficiency linked to under active thyroid and PA in any way?
Many thanks in anticipation
Written by
Janey54
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scalloped tongue=undermedicated. my tongue is SO sensitive to thyroid levels I can almost use it as a guide! If I start to feel a bit 'under' I can look at my tongue and, sure enough, it's scalloped.
I am taking 1 grain NDT and 25mcg T3 and find that if I take a quarter tablet extra when I feel like that, next day the tongue is back to normal.
It is more difficult to fine-tune like that when you take Levo because it is slow-acting, but you are clearly either under-medicated, or you are not able to utilise the Levo for some reason, ie you are not converting the T4 in the Levo to T3, the active hormone.
Getting your vitamin and minerals to an optimum level could improve conversion from T4 to T3 but if it doesn't there is strong evidence that you would benefit from reducing the Levo and adding some T3.
Yes you can ask for your blood tests and they have to give them to you but if you request a printout they can charge a nominal admin fee. Make sure they give you the reference ranges too.
The GP can say no to more frequent injections but they shouldn't unless they are aware of something in your health that your endo isn't that would mean more frequent injections are a bad idea. I can't imagine a scenario where this would be the case but some GPs don't like being told to do something they don't agree with because they are overall responsible for your care. Most GPs I've met would listen to the consultant unless they had a genuine concern. This happened to me once and I agreed with the GP . She was right, not the consultant With the b12 there shoukd be no problem with more frequent injections. If for some bizarre reason your GP objects, contact your specialist straight away.
Losing over 60lb in weight is amazing! It could definitely affect the amount of medication you need.
We have to take our own health into our own hands unfortunately. Thankfully some have recovered theirs and others are feeling much better.
If we have one autoimmune condition we can develop others. I also have PA and get 1/4ly injections. At one time injections were once a month, lengthened to every two months, and now every 3 months (ridiculous). I have now started to take sublingual B12 methylcobalamin which I order through Amazon. The reason is that I used to have blood levels of around 2,000 but dropped for some unknown reason to around 388 (doctor said 'in range'). No reason given and no injections missed.
We are entitled to print-outs of our blood test results for our own records and so that you can post here if you have a query.
You don't take levothyroxine on the morning of your thyroid hormone blood test as it can skew results. Have test as early as possible (TSH is highest then). Ask for Vitamin B12, Vit D, iron, ferritin and folate if you haven't had these done. Both Vit B12 and Vit D are essential and they are hormones rather than vitamins.
Thank you for responding this is all really helpful information, especially about not taking the levo on the morning of my blood test. Yes I'm a member of the Pernicious Anaemia Society I think they do a brilliant job in bringing PA issues to the fore
I read your post early this morning - I live in Crete so am two hours ahead of the UK. I was just on my way out and now I see you have had three helpful responses. It was a very sad read - but one we are so used to reading on this forum. So glad you are reading and learning.
I am suspecting you may have Hashimotos along with the PA - which as you know is also auto-immune. You should be able to have your injections for B12 more often as there are new guidelines that do mention treating by Clinical symptoms. Don't expect your GP has read them You can buy your own B12 injections on-line - if you go over to the PAS forum on HU and type - Purchasing B12 injections - into the Search Box on the Green Bar - a host of posts should appear and hopefully with some information
I do think you should have the Thyroid Anti-bodies tested - Anti-TPO and Anti-Tg. You mention gut issues which can be the beginning of Auto-immune conditions. Healing the gut is so important for everyone and our long-term health. Also it would be helpful to know what your FT3 result is - perhaps you could have it done privately. The website for private tests is also on the link below.
The above link is the information to reassure you that you are entitled to have copies of all your results.
Regarding VitD - again for LOTS of reading you could type VitD into the SEARCH box on the Green Bar at the top of the page and see what pops up Here are a few of my favourites....
The above link is a fab video - all about VitD - it's history. It is 90 minutes long but the time will fly.
Sorry for the information overload - just take a step at a time and please do ask any questions - am happy to help. ( You check out my edited profile by clicking onto my name and having a read )
Thank you so much for responding and for providing such great information, I will read through it over the next couple of weeks and hopefully begin to get a much better picture for myself of what's happening with me. I was told when I had the ultra sound scan some time ago that my thyroid wasn't functioning at all but I'm not sure how accurate that information was.
Not sure how they see from a scan that your thyroid is not functioning It may be smaller/shrunken but that does not tell you how it is performing. The TSH - FT4 - FT3 - will tell you more and of course the anti-bodies
GPs can and do say no to specialist recommendations - i have had this happen many times. Arrogant nhs gps have far too much power and it is insane what they get away with. After all, they are jacks of all trades and masters of none, while specialists are at least masters of one.
A trick that sometimes works is when they refuse a specialist instruction, ask them to put the refusal in writing. They don't like to do this and in my experience have given in - but not every time.
The best thing is to become as self sufficient as possible so that these profit-driven NHS GPs cannot destroy your quality of life. For example i do this by self medicating with ndt and self injecting every 3 weeks for P anaemia. I get my own supply of hydroxycobalimin to supplement the measly the nhs ration.
Many people need more frequent injections than the nhs ration.
This route is often simpler and involves less aggravation than trying to reason with NHS GPs who do not have your best interests at heart.
Janey, I agree whole heartedly with marram, Marz and bluedaffodil in particular. I can identify with much of what they have written. We do have to take control ourselves. I know it is hard especially when you feel ill but as you gradually improve with better B12 and Vit D levels etc you gain the ability to learn more about your condition and improve even further. Like Marz I had high TPO and went on Gluten and lacto free diet which did reduce the antibodies and improved my sense of wellbeing. I am still gluten free but now use Arla lactofree foods. I believe PA injections are being rationed now, down from 1 per month to one per 3 months but methyl cobalamin tablets certainly raised my B12 levels. I also paid for private blood tests. Our local CCG will only pay for TSH!!!! and the local endo is very happy with that!!!!!!!!!!!!!!
The support I have had from here has really helped me. I do not like to think where I would be without it, probably 6 feet under. Do keep coming back for advice and help.
Thank you so much for your support, I was feeling very alone and overwhelmed, knowing there are others in the same boat as me has made a huge difference to how I feel.
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With the b12 there shoukd be no problem with more frequent injections. If for some bizarre reason your GP objects, contact your specialist straight away.
You can buy your own B12 injections on-line - if you go over to the PAS forum on HU and type - Purchasing B12 injections - into the Search Box on the Green Bar - a host of posts should appear and hopefully with some information 
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