Hi I am new here. I was diagnosed with hypothyroidism in 2004 (I was 19 at the time, now 32) and never felt right before diagnosis.
Apologies for this potentially turning into a long post but my partner is not very supportive of me. He gets irritated when I get things wrong or I forget or I am clumsy, sometimes he makes fun of my clumsiness, is annoyed when I have such bad constipation it paints the toilet, doesn't like it when I want to sleep on the sofa and is annoyed with me when I forget to put on a sanitary towel if my period starts early and catches me out.
I just don't know what to do anymore. I do not expect any replies from this because I probably sound pretty hopeless. I feel self conscious when I go out some days due to how bad my dark circles and bags under my eyes are. I just feel really ugly most of the time.
So if anyone could please advise I would be grateful, thank you.
22 December 2017 (25mcg Levothyroxine)
Serum TSH - 4.77 (0.2 - 4.2)
Serum free T4 - 14.9 (12.0 - 22.0)
Serum free T3 - 3.6 (3.1 - 6.8)
TPO antibodies - 1500 (<34)
TG antibodies - 478.5 (<115)
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Blondie8502
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No, my dear. You're not hopeless. But your doctor is! He obviously knows nothing about thyroid!
Do you know that you have Hashimoto's Disease - aka Autoimmune Thyroiditis? No? I don't suppose your doctor does, either! Or you wouldn't be under-medicated on 25 mcg - half a starter dose! So, just in case you don't know how Hashi's works, I'm going to explain...
Hashi's is an autoimmune disease, where your immune system mistakenly takes your thyroid for the enemy, and tried to destroy it.
From time to time, the immune system will launch an attack on the thyroid, and destroy a few cells. It's just after these attacks that the antibodies are highest, because they come in to clean up the mess, so to speak. Your antibodies are very high, so you've had an attack not long ago.
After the attack, the damaged and dying cells leak all their stored hormone into the blood stream, causing levels of FT4 and FT3 to rise, which causes the TSH to drop.
These high levels are only temporary, and when the extra hormone has been used up, or excreted, the levels of the FT4 and FT3 will go down again, and the TSH will rise, and you will be hypo again.
This is what we call a Hashi's 'hyper' swing - aka Hashi's flare.
So, I'm imagining a scenario where you recently had a Hashi's swing, and your FT4 and FT3 rose quite steeply, and your TSH dropped. And your doctor panicked, and slashed your dose of levo. Am I right? Now, the excess hormone has gone, and you are hypo again, and under-medicated. Your TSH is too high - over the top of the range! And your Frees are too low - your FT3 is right at the bottom of the range, when most people need it up the top of the range to feel well.
Has your doctor seen these latest results? What did he say? All your symptoms are pointing to the fact that you are very hypo and need an increase in dose - 25 mcg and retest in six weeks. You should also ask for your nutrients to be tested, because they are probably very low : vit D, vit B12, folate, ferritin. These all need to be optimal for your body to be able to use thyroid hormone.
I'm sorry your partner is being a jerk, but nobody really understands this disease unless they have it. All your fatigue, and your forgetfulness, and your clumsiness, and constipation, they're all symptoms of your low T3. They will all improve when you get on the right dose of levo. Try telling him that. Tell him that your doctor has been mis-managing your disease and that you intent to take action to get the help and treatment you need. Get him involved. Ask him to go to the doctor with you, to back you up, to witness your doctors negligent attitude towards you. He might understand better if he does. Get him to read some of the posts on here, so that he can understand how Hashi's destroys lives, and how much people suffer with it, it's not just you. Thousands of people are in the same boat. And we've all been - or are - tired and clumsy and constipated. But, we all hope to get better one day. We're working on it. And so must you. xxx
Thank you, my endo intimidated me from taking anything higher and I am worried I will get overmedicated symptoms. I have had vitamins and minerals tested and I can only presume they are normal since I have not heard back about them. GP has also said she doesn't want me losing any weight.
Yes, well, never mind what your doctor wants. It's not her body! Your weight will even out when you are properly medicated.
The first thing you have to do is get copies of all your results - never mind waiting on the good will of your useless doctors to tell you what they are, if you live in the UK, you have a legal right to have copies of your results, because they are YOUR results. Once we see them, we will be able to work out a plan of action.
Doctors know nothing about thyroid - especially not endos, so just ignore that bullying moron! He's talking rubbish. Nobody is suggesting you become over-medicated, just that you become well! So, ask your GP or his receptionist for all your results, and let's have a look.
Bondie, Please give yourself a lot of credit for locating then reaching out to wise counsel at so young a age. You have what it takes to overcome thyroid mismanagement. It sounds like you are turning your anger (related to your companion's words) inward, toward yourself. Have faith everything will come out in the wash.
You were diagnosed in 2004 and you are ONLY on 25mcg of Levothyroxine.....
22 December 2017 (25mcg Levothyroxine)
Serum TSH - 4.77 (0.2 - 4.2)
Your TSH is over the desired range. (The range is the figures in the brackets). It needs to be under 1 to feel well.
Serum free T4 - 14.9 (12.0 - 22.0)
In the lowest part of the range
Serum free T3 - 3.6 (3.1 - 6.8)
Your Free T3 is only just over the bottom of the range.... MUCH too low. T3 is the usable thyroid hormone in the body. In order for your body to get T3, it needs to convert T4. Your body may be struggling to convert the small amount of T4 (levo) you are putting into it. But you need to increase your Levothyroxine first before trying any T3 (also called Liothyronine in the UK)
TPO antibodies - 1500 (<34)
- TPO antibodies should be Under 34... yours are 1500 **
TG antibodies - 478.5 (<115) - TG antibodies should be Under 115 .... yours are 478.5 **
** therefore you have Hashimoto's Thyroiditis and not Hypothyroidism.
If you have been in this state since 2004, all the doctors you have seen should be shot. No wonder you feel so ill.
50mcg of Levothyroxine is meant to be the "starter" dose only.
As far as your partner is concerned, believe me - the vast majority of partners (whether male or female) have problems understanding bad & complicated illness. I guess you could find some articles on this forum about Hashimoto's Thyroiditis (that is your illness) and ask him to read and understand. I walked out on my own 15 year marriage in 1987 having been diagnosed in 1981. My husband (the father of my only child) used to step over me when I was lying on the floor crying; another member or two have said that's what happened to them also. Many years later I said my marriage would probably have lasted if I had not been struck down with this vile illness. Now, I'm single, poverty struck, there's potential for me becoming homeless, living on a meagre pension. I would advise you to try to educate him on your illness, but from a "wise old bird" (me), make sure you are financially stable before leaving. May sound harsh, lacking in compassion - but life is tough.
Thank you, I have been on 25mcg since October 2017 from a dose reduction of 175mcg, and I was taking T3 very briefly. My endo has intimidated me from taking anything higher.
Blondie ~ don't worry, stay on the forum and you will get excellent advice. You will get well ~ try and learn everything you can about Hashis and follow instructions re vits/minerals ~ this has happened because your doctor is useless ~ you're not alone in that, they don't seem to know much about thyroid disorders at all. For your constipation, get some magnesium citrate powder and mix with water or juice ~ you will probably need magnesium anyway. Don't feel bad about yourself ~ you will soon be a new woman, and you may even find yourself a new man!
Thyroid treatment is a disaster even in the U.S. where I am. People who have the autoimmune condition continue to have it even if they are taking thyroid hormone. We've learned much, much more and you can handle this. After all these years and all those antibodies you need to support your poor body. At age 19 did you have mono or epstein-barre? There is usually a trigger for autoimmune conditions and gluten could very well be yours. I suppose your partner is not going to support the changes you might make. Many of the problems that develop are insulin resistance and/or estrogen dominance. Of course doctors are not very helpful with these either. You may need digestive enzymes and HCL to start breaking down the nutrients. An elimination diet for a few weeks or a ketogenic diet would support your body's nutritional needs. Your levo cannot work if your d level is low and the ones mentioned above so you should be supplementing those plus selenium and zinc. How long did your doctor intend to keep you on that drastic low dose? Can you see someone else or acquire your own levo? Tell your partner you need a month to yourself and lay off and hopefully he can take care of himself.
Thank you, I have never had mono or Epstein barr when I was younger. I had a severe dental infection in 2005 which required antibiotics, chickenpox in 1990, hip tendonitis in 2002 caused by wear and tear and I have a family history of autoimmune disease however.
You need to know the results love, doctors think anywhere in range is fine and it isn't 🙂 You have the legal right to copies of your blood test results, don't let receptionist tell you otherwise. Get them and post on here and you will get advice. Chin up kid, there is light at the end of the tunnel.
Your endo is incompetent to drastically reduce your dose by such a large amount. He is probably a diabetes specialist. I know it is incredibly hard when you feel so rough but you need to take control of your own health. Doctors are not gods and they do not always have the knowledge to treat every illness correctly. Just because results are in range does not mean they are optimal for you. Also most doctors have very limited knowledge on nutrition, vitamins and minerals so you cannot expect them to interpret results correctly.
You first need an increase in levothyroxine with repeat blood tests in 6 weeks. Always ask for paper copies of your results, then post them on this forum for advice. If you can get past copies we’ll and good.
Have you at any point felt reasonably well? If so what dose of medication were you on at that time? It is somewhere to aim for. Once you feel a little better try to take the time to learn more about hashimoto’s, knowledge is power! Good luck.
Blondie8502 If you felt well on 200mcg Levo + 20mcg T3, that's what you need to get back to. If your Krap doctors won't play ball, you will have to buy them both off the internet. Levo should be easy to get; but T3 is more difficult due to the NHS etc saying it's too expensive now to give out like sweeties. There was a massive furore on here last spring/summer time (even before that) when many were having their T3 prescriptions cut. If you want to buy it yourself and cut out doctors (many here do that), write another post asking for help where to get it from.
Another alternative is to get your hands on a T3 (& T4 if you're clever) prescription, either NHS or private; you can then send the physical prescription off to Germany to get it legally prescribed. The cost isn't too bad. PM me if you want more info.
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xxx 
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