Having visited the doctor today I thought I would share my experience.
For sometime now I have experienced fluctuating blood pressure throughout the day - highest 181/93 lowest 121/79 and even 105/63 (when I wake up). I've worn 12 hour BP monitor and GP showed results which did show average over the course of the day so she is not concerned. I worry because they say seesaw BP leads to strokes. I've got too much left to do in life to worry about strokes!
I'm also worried because my tinnitus is getting louder and I have a pressure headache which is not receding. I thought this may be because I had a virus or maybe because I've swapped my Levo for Thyroid S. I was on 175gsm Levo so have now upped to 4 grains Thyroid S a day. My digestive system is amazing since switching to Thyroid S and I'm losing weight which is good.
I asked if the doc if she had heard of Hashimotos as this is linked to Adrenals which is linked to HIgh blood pressure which could be causing my tinnitus. I asked if I could have tests for Hashimoto and adrenal and she said the NHS don't offer this because there is nothing they can do if the result is YES.
Is there any point in having these tests? What can be done if I do have Hashimotos and Adrenal fatigue?
Fed up with head pressure and tinnitus. Any thoughts peeps?
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vavthyroid
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"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
Vavthyroid, I think you should be checking thyroid levels, particularly FT3, as 4 grains is the equivalent of 300mcg Levothyroxine. Overmedication may be why you have developed a pressure headache and worsening tinnitus.
Thyroid peroxidase (TPOab) and thyroglobulin (TgAb) antibody tests determine whether you have Hashimoto's. NHS will usually only test TPOab but some people are negative for TPOab and positive for TgAb. You can order private thyroid tests including both antibodies from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...
If you have autoimmune thyroid disease (Hashimoto's) it is untreatable but flare ups, symptoms, and antibodies may be reduced by adopting 100% gluten free diet.
NHS test serum cortisol. They will recognise below range which means adrenal insufficiency (Addison's) and high cortisol (Cushings). Adrenal fatigue is not recognised. You can order saliva cortisol tests which determine whether levels are what they should be at various points of the day. Members can advise whether results mean you may benefit from adrenal supplements. You can order saliva tests via the link above.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I'm really glad I posted my question because you're response prompted me to google conversion charts. The trouble with Thyroid S is that the instructions are in Thai so I relied on forum posts for dosage guidance. I can' believe I'm admitting to this but I felt so dreadful before I was desperate.
Everyone I know is taking 3 grains if on 125mcg Levo. So I went up to 4 because I was on 175mcg.
Back down to 2 grains tomorrow then! I'll let the others know on my thyroid Facebook group.
I'm having a NHS general TSH test next week. I'll look at booking the private tests when I get some money in. BTW I had a blood test for food allergies 8 years ago - they measured antibodies and gluten and diary were sky high so haven't eaten these since. I know if I have eaten them in error because I become really depressed and tearful within 10 minutes.
Vicky, Those conversion charts estimate that 1 grain is bioactively equivalent to 100mcg T4 which I believe is an overstatement on the part of the NDT manufacturers. 1 grain contains 38mcg T4 + 9mcg T3. The combined dose is equivalent to 65-75mcg T4.
Reducing to 2 grains may leave you feeling undermedicated. Why not see how you feel on 3 grains.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I've been on 3 grains up until the weekend and was feeling the same, so upped to 4 grains hoping I was feeling better. Maybe I should try 2.5 grains? I was feeling fine on 2 grains I think. I'll reduce it gradually.
Vavthyroid, You've only been on 4 grains a few days so I think it will be fine if you go back to 2 or 2.5 grains. If you need to increase dose do so in 1/4 grain increments as you'll go sailing by your optimal dose otherwise.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
If your dose was so high Vicky, why do some NDT's come in 5 grain size tablets?
I have the same problem as you, for the last couple of years my blood pressure has been all over the place. I was 120/80 for decades, now it can be high or normal. I have the very loud tinnitus that drives me crazy, but I had tinnitus before thyroid meds, I also now have hearing loss as my hashimotos wasn't diagnosed for 20 years. I have done adrenal testing a year apart and my cortisol is very low, low enough for my GP to put me on ,10mg Hydrocortisone. I'm now funding my own hydrocortisone as it's really expensive on the NHS.
Dosing of course can also depend on your weight. Blood pressure can resolve on optimal thyroid meds and treatment for low cortisol. If otherwise you are feeling a lot less hypo, why change anything? You know the symptoms for over medication, racing heart ( but it can race in too low hydroxine and anaemia) above normal temperatures and diarrhoea. You will feel horrible over medicated! I use my thermometer at least 3 times a day, most days. My temperatures have only come up to normal whilst taking hydrocortisone. If you cut back and feel terrible it can take a very long time to get back to how improved you're feeling. I take 3 grains of NDT with 3 tablets of T3, I'm 15 stone 12lbs though unfortunately. I'm going to drop the T3 and take 5 grains in total when my order comes. It's the only thing I haven't tried, all NDT. NDT is the only thing that has stabilised my weight.
Hi Shaw's, thanks for the reply. Changing from T3 to extra NDT is only a little more expensive. Westhroid only goes up to 3 grains, well on the site I use. I'm ordering another 2 grain tablets, to go with my 3 grains. The only thing I have really responded to is NDT. I remember a poster on here a while back saying she needed 5 grains, and other family members have only done really well on 5 grains so I feel I need to try it. I've always needed larger doses just to function, I take other medication, but keep it well away from thyroid meds. I still have really dry skin, I just can't improve that whatever I do. My face is peeling at the moment, my forearms have gone like sandpaper again, really dry red lumps, and my heels are cracking again. Whatever I do I can't improve my skin. Still have horrendous constipation, I drink loads of water always 2 litres, and I eat plenty of fibre. I made stew last night with green and red lentils added to the meat and vegetables, plus we had sprout tops, and still I can't go. I seem to have lost my bowel motility. I'm getting anal fissures all the time. Still having hair loss, and feel like I haven't slept in 10 years. Never have any stamina or energy. So anyway, I will give it a go, and see if it's my lightbulb moment!
Are you taking Betaine/pepsin tablets or Apple Cider Vinegar with meals (protein)? Sometimes it's our slow system which cause bowel/digestion problems.
I prefer the 'old fashioned' method of treatment, i.e. we obviously know our clinical symptoms by now and patients' doses were gradually increased till they were free of them. If overdosed dropped back to previous one. No-one bothered about maximum. It varies from person to person. I've found Nizrol for hair loss plus Turmeric tablets very helpful. I saw something about a new product for skin which I thought of trying out. I'll try and find link.
Hi Shaw's, I have interstitial cystitis, so no I can't eat or drink anything with the slightest acidity because it causes horrendous bladder pain. For example I changed my non acid Vit C as it was a bit cheaper, after 3 tabs I had 5 days of severe pain and frequency of urination. What set off the bladder flare was the rose hip extract that was in these tabs, I've given them away and back on my usual one. I was taking cimetidine for 13 years as it's one of the treatments for interstitial cystitis, it lowers acidity including stomach acid. It was definitely contributing to anaemia and low B12, so about 6 months ago I weaned off it and trebled the dose of my other bladder drug, it was a bumpy ride but I'm still off it. I'm taking magnesium citrate to encourage motility by relaxing muscles, and Vit C. I honestly struggle to push anything out, and I don't get more than 3 days together without bleeding fissures. It's so painful having these, and really contributing to me staying home all the time. I've had to use ridiculously high doses of gabapentin, often waiting for hours to get any relief from the pain. My diet is really good and I have to drink a lot of water to keep my bladder comfortable. My daughter who has hashimotos too has the exact same problem, although she doesn't have fissures yet. I'm sure if I could get out more it would help the motility.
I can't get on top of my anaemia as I'm bleeding from my bottom and my urine always has blood in it. If I could raise my iron I know the thyroid meds would work better, and help my hair loss.
I will look up Nizrol, thank you. My scalp has thickened skin which flakes, I think it's just down to dry skin because I've used every medicated shampoo there is. It's the top and temples my hair is falling out, I'm seeing a lot of scalp and my curls have gone.
I don't remember feeling this bad on 2 grains, so am going to go back down to that for a while and see how I feel. It could be that I have a slight virus as I feel a bit coldy. I do wish you could get home thyroid testing kits - it would be so much easier to medicate correctly.
Hi Vicky, if it's your first time on NDT, you can feel quite horrible when you raise it. I had the experience of feeling like I must be over medicated because it was a very bumpy ride. I just hung in there and within 2 weeks everything had settled again.
Have you taken your temperature before getting out of bed in the morning? If it's low then maybe you have a way to go, if you're well over 37 degrees you may be overmedicated. I've used my temperatures to try and get optimal dosing.
Wouldn't it be great if we could get accurate tests for thyroid rather what's in your blood at the time you get your blood drawn. I believe the urine test is the most accurate one, sometimes with surprising results. I remember people on this site having a very different set of results compared to the serum ones. The urine test measures how much thyroid medication you take into your cells, correct me if I'm wrong. I would love to do this test, I think it's a 24 hour collection of urine.
Great! I've found even if I'm sweaty my temp can be low, makes no sense at all! Obviously food and drink will raise your temp a little. Best time is on waking before you even get out of bed. I then sometimes take it if I'm feeling rough or shivery too. You want stable temperatures as near to 37 deg as you can get them!
Before I was diagnosed mine were in the 35's and I felt terrible. I logged my temps for 5 days on a piece of paper by the bed, and showed my doctor.
Forgot to say Vicky is that it's quite normal to have a headache when you're increasing NDT, it's the T3 that's doing that. I remember Dr Skinner telling me this, mine settled in 2 weeks.
It's not fair. I hate to wish ill on people, but ... if Jeremy Hunt had all of these symptoms too and then he might do something about proper treatment and diagnosis.
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