Good morning everyone, just seen my new young and seemingly keen GP. Following a battery of blood tests he assures me everything is fine! I was even tested for ovarian cancer. I do still have a huge constipation problem but a daily lacitive is all that is required. He has now decided that although I still have a tongue too large to let me eat, I need a new thyroid function test in a couple of weeks. We agree they more than likely won’t do T4 and T3 even if he asks which apparently he will, but let’s wait and see. He then suggests I see him a couple of weeks after that to see if I am “better”. If not he will refer me to a Speech and Language therapist. This will teach me swallowing techniques, not sure why I need this as nothing wrong with swallowing reflex. Apparently the white lumps along the side of my tongue which my dentist worries about are simply my biting my tongue. Never bit my tongue that I know of, my husband was very surprised to hear this as he has never noticed either!
We discussed my low T4 andT3 levels and that I had asked for a referral to an endo. Apparently I do not meet the criteria for a referral no matter how bad my symptoms. I suspect he agrees with me but his hands are tied.
I can’t believe I will probably have a speech and language referral!
So shocked I left without a copy of my results! Had to email requesting them.
End of rant, sorry for myself today
Written by
Miffie
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SlowDragon I am currently on 150mcg daily. I had low VitD on last testing and am now supplementing adding Magnesium and K2 for best results. I have felt the beginnings of a slight change in that the dreadful over heating has now gone. Back to being blissfully chilly. Due to have NHS bloods done in a couple of weeks. I will probably have to pay out again for anything other than TSH. After 55 years of being underactive I have say this is the offer to refer me for speech and language therapy is the most ridiculous suggestion I have come across. It seems a complete waste of hard pressed recourses.
I am also diabetic which makes conversation more of an issue as times goes on. The GP agrees with this.
Maybe I shouldn’t have kept my frustration under control and just cried!
To be quite honest, I think more of us should find ways to express our displeasure and distress at our poor treatment while we are still in the consulting room. But if you weep, you'll be put on antidepressants.
As soon as my half-moon reading specs have had new lenses, I'll be deploying them in any healthcare situation. It's amazing how they make doctors quake. 😈
Thank you, I have had everything tested. I have never had raised antibodies. Vit D low, now supplementing. Everything else is good on blood tests. I am absolutely incredulous at his take on things. Take enough laxative to use the loo daily, even if I only eat two pieces of fruit a day. If I still cannot put any more food in my mouth in a months time due to tongue size I will be sent to speech and language. Having had an underactive thyroid for 55 years I do know how it makes me feel, I cannot wait to discuss my bowel problems with the speech and language consultant. Who knew?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Can you add the actual results and ranges of TSH, FT3 and FT4
TSH should be under 2
FT4 in top third of range
FT3 at least in top third of range
B12, folate, ferritin and vitamin D too
Vitamin D needs to be at least around 80nmol and around 100nmol may be better. How low was vitamin D and how much are you supplementing?
B12 at least over 500
Folate and ferritin at least over half way in range
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
Magnesium supplements can also help with constipation. Many of us on here supplement magnesium.
Calm vitality magnesium powder is cheap and easy to use. Best to start with a small dose and increase slowly until you get desired results. Too much can cause diarrhoea!
conversion of FT4 to FT3 often gets worse over time, especially as we age, especially after menopause and also with being diabetic
Many patients need the addition of small dose of T3
Obviously first step is FULL Thyroid and vitamin testing
Low levels of B vitamins and low iron will make the tongue swell. As a result the tongue is pushed against the teeth and it creates a scalloped edge.
The condition has various names - scalloped tongue, pie crust tongue, lingua indentata and crenated tongue. (I must admit I had only ever heard of the first two of those before today!)
You will need to get your B12 and folate levels tested. You will probably need to take a B Complex tablet or capsule, and you may well need a separate B12 supplement too. But don't supplement anything until you know how bad your results are. You may have Pernicious Anaemia, and that can only be tested for before supplementing.
B Complex supplements aren't all created equal. Some are better than others. In some people the body can't absorb and make use of B vitamins unless they are in their active form and don't require conversion within the body.
So for vitamin B12 :
Inactive forms = cyanocobalamin ; hydroxocobalamin
Active forms = methylcobalamin ; adenosylcobalamin
For folate :
Inactive forms = folic acid
Active forms = L-methylfolate and L-5-methyltetrahydrofolate
Other active B vitamins are listed here, although the list is incomplete :
Note that the first product has a dose of 1 capsule per day, and the second has a dose of 2 capsules per day.
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The other possible cause of your scalloped tongue is low iron. You would need to test iron properly. Knowing just serum iron or just ferritin isn't enough. You need to know both, plus a couple of other things. A good finger-prick test is given on the first link, and read the second link to find out how to get money off the cost :
Once you know more about your iron/ferritin levels you could post the results in a new thread and ask for feedback.
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Sadly, the other major cause of having a scalloped tongue is being under-medicated for hypothyroidism. It's easier to fix any mineral or vitamin deficiencies than it is to get a raise in dose for the treatment of hypothyroidism - so, fingers crossed, and good luck.
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Totally confused and fed up
Fed Up with Hypothyroidism...
Sigh :-( fed up today :-(
fed up of feeling so rubbish!!
Fed up
