I have been suffering with a wide array of both hypo and hyper symptoms for the past 21 months. I was diagnosed hypo almost 20 years ago. I have been on Lio and levo for about 11 years and until 21 months ago my hypo was well controlled.
In February, I changed from Pharma lio to Sandoz and then a couple of months ago, I finally got a prescription for Perigo. I have felt better with this - I am certain it's because it does not vary in strength as much as Pharma as the States has tighter laws.
However, my hypo and hyper symptoms continue to get worse. I saw a consultant last August who confirmed I had hypo and hyper. He said cause was unknown although there were theories which he would not discuss. He told me it would be extremely dangerous to decrease my thyroid meds and that was it. He then moved to another hospital so I could not see him again.
In mid February, I had a follow up visit. I was switched to a registrar. No endo was even in the building!!
She was unable to answer any of my questions and did not know it was possible to have hyper and hypo symptoms. She did arrange for my change from Pharma lio.
I now have another follow up endo appointment on the 12th July. I've read on this site that the only cause of a lot of hypo and hyper symptoms is an adrenal problem.
I can't find the link or anything that confirms this. I thought if I could print some articles and take them with me, I might be able to persuade the consultant to request an adrenal test.
I've been unwell now for such a long time, I'm desperate to find a solution.
I have refused to have any blood tests for over a year. When my gp made me reduce lio by missing every 12th tablet, I quickly became really ill. I can't take missing all meds for 24 hours. I've also read that an extreme reaction to a very small change in meds is another symptom of adrenal problems.
I don't want to bore everyone by listing all of my symptoms but I've gained a stone and a half. I suddenly get really hungry - headache, sweating, dizzy. I've lost all hair under my arms and at the end of my eyebrows. I have lots of tummy pains and problems. I have lots of random muscle aches and no strength in my muscles. I also have problems getting to sleep and staying asleep - probably due to anxiety.
I'd really appreciate any help particularly references anyone can give me.
Thank you so much.
Regards
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dizzy864
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tgab antibodies and tpo antibodies testing..yes, you need to know if your immune system is attacking your thyroid, thinking it is a germ!! it is the most common reason for thyroid dysfunction.
Hi, Unfortunately, I haven't either. It took four years to diagnose my hypo in spite of two gps being adamant I had hypo. I was treated for three years with premature menopause, in spite of no family history. My female gp did not believe in the blood test and refused my many requests for it. I had 11 hrt tablets and 2 patches, each making me more ill, before I said no more. Then I was diagnosed with depression and told to go on uppers. I refused, changed doctors. I was given a blood test which showed very conclusively that I was not in the menopause. Explains why hrt made me so ill. When I finally got a hypo diagnoses from a gynecologist, I thought my troubles were over. I was wrong!
I suffered for years with a diagnoses of asthma and then fibromyalgia. I became very disabled, barely able to walk. Then I found an article on the net stating that most fibro patients actually have vitamin D deficiency.
I asked my gp for a test and found I was vit. D deficient. I never had asthma either it was part of the vit D problem.
I'd suffered for years (again ) unnecessarily. I had three years of great health. Losing the several stones I'd gained by inactivity and enjoying life once again. Now I have more health issues, which once again are being ignored by doctors.
please ..you can order your own thyroid testing, no prescription. in the mean time try the autoimmune paleo reste diet and look into reversing autoimmune disease..dr mark hyman and isabella wentz..please google this. i believe you have autoimmune disease and food sensitivities could be causing all this, pain, hormone dysregulation etc..
No, the current and past medical system is ill prepared for those of us who are truly sick and they want to make patients out of us by seeing to it we have patience waiting for them to use their skills and privilages of diagnosis, treatment, and prognosis. You are a saint in my book. Keep on keeping on.
when i tried ndt with t3 in it, i had that too...dr told me it was adrenal fatigue and did some reflex strength stuff......i didnt get my cortisol checked hence i also had low dhea and low testosterone and he said i need to take xymogen adrenal manager for a while then try ndt again......when i got adrenals checked and not being able to use t3 is a red flag for adrenals problems.....just thougth i would share
Re ...[....the only cause of a lot of hypo and hyper symptoms is an adrenal problem ...] .... ? ? There are numerous causes why you would feel hypo and hyper & symptomatic.
Good thyroid function does rely on an adequate level of cortisol but also optimal thyroid hormone replacement and nutrients and iron ... and low thyroid antibodies.
Liothyronine has a short half life and should not be missed every 12th tablet//day. In fact many members including myself multi dose T3 several times a day.
Tummy problems may indicate hypochlorhydria caused by low thyroid hormone. Gastric acid is important for breakdown of food and release of micronutrients and absorption of iron, Vit B12, calcium, etc… all important for good thyroid hormone synthesis and random muscle aches could be down to nutrient deficiencies ... especially Vit D.
Adequate iron is not only needed for carrying oxygen but is used in the actual production of thyroid hormone by the enzyme thyroid peroxidase.
Getting really hungry might indicate the beginnings of insulin insensitivity (when we have enough glucose in the blood but it is unable to enter the cells for energy). Cortisol, adrenaline, noradrenaline and DHEA all that play a vital role in blood sugar regulation.
Why have you refused to have blood tests for over a year ? ? ...
Ask your GP to test thyroid hormone levels and Vit B12, Vit D, ferritin and folate. If your GP is uncooperative, you could use private labs as many members are forced to - link below.
Members use private labs for saliva cortisol//DHEA testing - link below
Post results complete with ranges (numbers in brackets) for members to comment.
Four saliva tests that measure the available "active" cortisol (& DHEA) secreted at set times over a 24 hours period. The results will allow you to see any imbalances in the daily circadian pattern so enabling use of correcting supplements to aid your adrenal health. Unfortunately this test is not generally used or recognised by GP's.
The cost is £77.00 which is a discounted price for THyroidUK when code A42AQ is used.
Firstly, I didn't explain my med reduction very well. For the past 9 years until Feb this year, I was on 3 x 20mg Pharma lio taken first thing in the morning, mid afternoon and last thing at night. I also took 100mcg of levo last thing at night. When I said I had to miss every 12th tab what I meant was I missed the afternoon tablet every fourth day.
I was then put onto Sandoz ( Austrian ) lio and have since been switched to Perigo, which works better for me.
With regard to vitamins, I was diagnosed with vit D deficiency almost 4 years ago and supplement. I've also been supplementing with B12 for the past couple of years.
I had some general blood tests in June last year:- Serum B12 617 (87 - 883),
I was concerned that some of the results were near the end of the range, my gp just said they were all normal and fine. Because of what I had read on this site, I did supplement iron. I tried several different kinds, all really upset my stomach. I took gentle iron for about three months but could not tolerate it any longer. There was no improvement in my hypo or hyper symptoms.
My gp refused retests because results were all "normal" and was very against me taking iron supplement.
Dec 2014 Vit D 84 ( over 75)
I last had my thyroid test a year ago. Free T4 17.4 (12 - 22), TSH <0.01, Free T3 8.18 (3.1 - 6.8).
I had only gone about 10 hours without thyroid meds prior to the blood test. The consultant that I saw said that he could extrapolate these results back to if I had not taken meds for 24 - 36 hours and they were alright. He said when I had my next thryroid test I must stop all meds for 36 hours prior to giving blood. I feel unable to do this at present as I quickly become even more unwell and it takes me two to three weeks to recover.
The consultant also said that all of the blood tests were normal and I should not supplement with any thing.
I hope this helps.
I did want to mention one other symptom that I have that is causing me problems. My eyes are always sore to some degree. It's hard to explain. I don't think it's dry eyes. I have suffered with dry eyes at times in the past and it causes my eyes to water and they aren't at present. I have tried four or five different kinds of drops for dry / sensitive eyes. They all really sting when I put them in and my eyes sting for up to 20 minutes after. The nearest I can get to explain is that my eyes feel really tired all the time, like I've been up for a really long time. It is painful sometimes just to close my eyes. I am also extremely light sensitive. I wear dark glasses all of the time that I am out doors otherwise I am really squinting. My vision also varies tremendously. It deteriorates throughout the day and is always worse at night. Sometimes it is so bad, I can't see to read. It's like looking through a fog. Usually, when it's this bad, I can't read for several days and then one night it's fine again.
I also keep getting a head ache around my right eye. Usually just above it but sometimes at the back of my eye or underneath it. It's always around my right eye and very frequent and long lasting.
Thank you so much for your help. It is really appreciated.
Members on this forum commonly advocate 24 hours between the last med dose and blood draw but I have read that TSH can begin to rise after 12 hours as the pituitary senses low thyroid hormone … but I guess it depends on what you read.
However, I have never heard of having to leave off meds for 36 hours before testing and would consider this to be too long. (Most doctors say it is not even necessary). It would make me feel simply awful and must stress the adrenals to be suddenly deprived of T3 (with its short half life).. If your endo is knowledgable enough to extrapolate your previous results why would he expect this of you now ? ..
I also think it wrong to miss a T3 dose as your body will miss it. As you are additionally medicating T4, there are other ways to adjust your total of thyroid hormone replacement. You are also on quite a high dose.
Your tests are over a year old. As you feel so unwell it would be prudent to have nutrients//iron retested but on these old results: Vit B12 is 617. Optimal is 500-1000. Are you supplementing ? Iron is too low and needs raising as is not only required to carry oxygen but required for the thyroid peroxidase enzyme to produce the thyroid hormones & covert T4 - T3.
White blood cell count is often low in people with auto immune disease and red blood cells require adequate levels of iron, Vit B12 & folate to be formed.
Your thyroid results (from over a year ago) indicate over range T3. If I took my meds 10 hours before these results, I would be worried about an over range T3 result. Results don't always denote how you feel and higher in range isn't always good. I function better with low thyroid hormone..
Ask your GP for a thyroid function test as you should have a test 6 weeks after every dose adjustment. Also ask your GP to test thyroid antibodies TPOAb & TGAb to determine Hashimotos Auto Immune Disease. It is not vital to know when you have been hypothyroid for so long but handy if you have irregular results as gives you direction to improve.
Re your eye(s), you could investigate Sjogrens. This is another autoimmune disease common with Hashi that attacks glands that make the fluid such as our tears and saliva. It can make your eyes very sore.
Doctors have no idea how important optimal nutrients//iron is in people with thyroid issues.
Advice & Info on which tests would be helpful already given above.
I agree completely with your comment about my consultant. I could not understand why anyone needs to stop meds prior to a blood test if result can be extrapolated back. But that was what I was told.
I've been supplementing Vit B 12 for more than two years. I take 250mcg a day. I was surprised that my level was not higher in range after supplementing for over a year ( at the time ).
I am prescribed 800mcg vit D a day, but I find this is no where near enough. If I'v been out in the sun during the day, I take 800mcg, but during the winter and when I can't get out in the sun I take 1400mcg a day. My problem is that my body cannot store vit D adequately.
I have been on the same dose of lio and levo for 9 years. I have been told that it is a bit high. I have tried over the years to reduce both levo and lio ( separately ). I become really ill, really quickly. The latest advice I have been given by a consultant last August was that it would be extremely dangerous for me to reduce either of them whilst I still have so many symptoms of hypo and hyper. If I have a thyroid test with my gp and the results are above range then I will be ordered to reduce in spite of my severe hypo and hyper symptoms and the advice of the consultant.
I do not believe my gp will agree to re test my iron, B12 levels etc as he believes they were all normal.
As I said, I did supplement iron for a few months, trying various forms. I am hypersensitive to all meds and I had an extremely upset stomach - sudden and frequent bouts of diarrhea, which stopped me being able to leave my house. I lasted three months on gentle iron reducing from three to two to one tablet a day but still could not tolerate it. Doctor was no help as he was against me supplementing iron as he considered it was high enough.
I would have liked my iron levels checked at that point. I just hoped I had raised my levels a bit.
It's interesting that you mention auto immune disease. This is another issue I hope to raise with the consultant next week. My daughter was diagnosed just under a year ago with auto immune. I thought she might be hypo as she did have many of the symptoms.
Yes, it could be Hashimoto's. I have that. Going gluten free is step 1. You might be eating foods that are either increasing or decreasing your thyroid levels. If you have Hashimoto's, you do not want iodine! Also, you don't want to eat loads if goitergens if you are hypothyroid. It could be an adrenal issue too. I take adrenal glandulars and my naturopathic dr told me to take Ashwaganda. That has helped with anxiety. I'm in the states and I am not familiar with the medication you are taking. Are you on synthetic thyroid medication? If you are, that is a t4 only medication, and you body might not be converting the t4 to the needed t3. I would recommend going on a natural desicated thyroid medication that has both t3 and t4 like Armor, and take a look at : stoptgethyroidmadness.com. It's a life saver. Good luck!
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