Still going around in circles, very confused

[Rosebud1955]

Hi all, I posted two weeks ago but still lost and confused. My endo is not paying attention. He mentioned in my last visit that he wants to wean me off Cytomel because he doesn’t think it’s good for me. Since starting Cytomel I have some improvements, less fatigue, more energy. I would have been a lot better if he gave me more T3. I was on 100t4 & 10T3 but still not feeling well. He suggested I increase T4 to 125 mcg & decrease T3 to 5mcg. This is all a part of his plan to eventually take me off T3. His reason being my suppressed tsh. I tried having a civil conversation with him to reinforce that I made improvements since starting T3, and that I would do even better if he increased T3 to 12.5 or 15. Since he was headstrong on his reasoning, 8 humbly agreed, knowing that I would do it my way. This is what I did : I increased T4 to 112.5 (pill splitting) and remained on the 10mcg T3. I ended up with increased heel pain, plantar fasciitis got worse, severe headaches. After approximately 2 weeks I have now decided to go back to taking 100 T4, 12.5 T3. I take 100T4+10T3 at 7am. Later in the day at 4pm I took the other 2.5 mcg. (started yesterday) I slept better last night, no headaches. After breakfast @ 11am, started to feel dizzy, now this is the reason fo me feeling confused. Am I making a mistake along the way? I know I need to remain on my dose for a longer period of time, but the headaches were unbearable and the fatigue was creeping up again. I’m trying to do some tweaking to feel comfortable as the holidays approaches. I still have a little time to play with because I’m due for blood work first week in February. Any suggestions as to what I can try next. Apart from the dizziness today, I feel better since I took the extra 2.5 and dropped the 12.5 T4. It was very obvious in the early months after my TT that I have conversion issues, that’s why he decided to start the T3. I don’t want to go back to the dark days. He also mentioned trying NDT if his plans fail. Would love feedback from you knowledgeable folks. I will refresh you all with my most recent labs. Tsh: 0.02 (0.32-4.00), FT4: 11 (9-19), Ft3: 3.9 (2.6-5.8) these bloods were taken when I was on T4100 & T3 10, taken together @ 7am, following the guidelines suggested here. All vitamins were optimal 3 months ago, I supplement with VitD, B complex, B12, Magnesium glycinate 400mg at bedtime, selenium 200mcg daily. I hope I’m not being a nuisance but I’m longing to feel well again, even 75% would be good. I feel depression is setting in, not leaving the house at all, no interest in life, no motivation. Please, can someone tell me it will get better, I can’t continue this way. Thanks for your advice and patience.

[Bronagh1980]

Hi

For years I did the exact same as you. I was never away from doctors begging to change my dosage and at times they did agree. When they didnt I did my own thing. I wanted to feel well and was working full time and extra shifts in between. In the end I could no longer fight the fatigue. My symptoms of underactive thyroid, fatigue, shortness of breath, myoclonic jerks, irritable bowel, depression, arthritis, pain, dry eyes, confusion, poor sleep were so bad I got a referral to rheumatologist who diagnosed fibromyalgia. A condition I had never believed was real. I finally admitted defeat with the thyroid and acknowledged the symptoms I had been suffering for years were not due to my underactive thyroid. I did feel anger at the Gp doctors as I felt they should have put 2 and 2 together sooner and saved me years of running back and forward with what I thought was my thyroid symptoms. I dont know if that info is of any use but I wish someone had sat me down and looked at all my different symptoms and pointed me in the right direction instead of all the worry and pushing for answers for years.

[ddmsss in reply to Bronagh1980]

so , the final diagnosis was fibro ?

[Bronagh1980 in reply to ddmsss]

Yes. The symptoms I am suffering were due to fibro not that I was not taking enough thyroxine. I am a retired district nursing sister and pride myself on my knowledge but even I didnt see that diagnosis coming. Now I have accepted it I try and manage my symptoms as best I can.

[Marz in reply to Bronagh1980]

Was your Levo/T4 converting into the Active T3 ? Is your T3 level near the top of the range ?

I too was diagnosed with Fibro in 2000 and Hashimotos in 2005. Good thyroid treatment and optimal levels of B12 - Folate - Ferritin - VitD are needed for thyroid hormones to work well in the body.

Are you taking any meds that could be interfering with the uptake of your Levo ? Do you have Hashimotos ?

[Bronagh1980 in reply to Marz]

At one stage I was on t3 prescribed by the endocrinologist. It didnt help. I was taken of it as I began to have hyperthyroidism symptoms. I remember feeling at a loss at that time as if nothing was going to help me. I take my thyroxine at 4am with a large glass if water and nothing else. I have adhered to all the best advice regarding treating underactive thyroid and nothing really changed. Over the years I have supplemented my thyroxine with every vitamin and mineral out there. At times I felt maybe this or that is helping only to feel miserable again a few months later. I went on to buy more and more supplements desparate to feel well . I'm not saying there are people out there who dont need their dosage of thyroxine looked at, I'm just offering food for thought.

[vocalEK in reply to Bronagh1980]

Was your dose of Levo reduced when you began taking the T3? Your doctor should have tried that before discontinuing the T3.

[Rosebud1955 in reply to vocalEK]

yes, I started out on 125mcg, it was decreased to 112 with no T3, I became very ill, it was then reduced to 100 + 5mcg T3, I was still very ill, so it was increased to 100 T4 + 5mcg T3 twice a day. This all came about because of of suppressed tsh. I have never been well since the first decrease. I wish I knew better then, I would not have allowed it.

Thanks.

[vocalEK in reply to Rosebud1955]

I said "when you began taking T3" rather than "before you started taking T3. " I have no idea what is in the head of a doctor who has no concerns about how your health might fare is s/he reduces your medication.

The idea is to replace some of the dose of T4 with some T3. Since T3 is more powerful, the replacement would be more on the order of 1 for 4 rather than 1 for 1.

[pennyannie]

Hey there Rosebud

Is this a new endo from some months ago when I spoke with you, as he/she seems to have changed sex, or am I confused ?

I am still on the NDT as previous detailed and am doing much better than on the synthetic thyroid hormone replacements.

Since this endo has offered Natural Desiccated Thyroid maybe it is worth some thought ?

It will be a slow build but you dose to the relief of symptoms.

This was the only treatment for hypothyroidism for over 100 years prior to the synthetics and the introduction of blood tests, ranges and the TSH score card system.

Your TSH will be suppressed but since you haven't a thyroid I can't see the relevance of this test, and the tests were designed for the synthetic thyroid hormone replacements and not for NDT.

Vitamins and minerals need to be maintained at optimal levels, but ultimately this applies to which ever treatment option you choose.

[Rosebud1955 in reply to pennyannie]

Thanks for your input, I was seeing both male & female Endos at the same time, was just testing the waters to see which one would be more able to understand my thyroid symptoms. I had to fire the female as she was totally useless, the male is a bit more reasonable, but still thinks like an Endo, obsessed with the mighty tsh. I’m sticking with him because he’s a little more flexible. I find it very scary making even small changes because I’m afraid to return to my dark days of suffering. I would consider the NDT, he did warn me that it would be more difficult to make adjustments if needed. He treats some of his patients with NDT and T4, in your opinion, is that safe? I just want to begin to feel normal and to stop the obsession with my health. It’s hard for me because my family does not understand the journey. They think I should just listen to the doctor and be thankful that I’m alive. What an atrocity, no one really understands how much we suffer as a result of this horrible disease. My grown children keeps telling me that I look O.K, they can’t really understand that my suffering is internal, I try to suffer quietly, even when I’m in great agony. I pray for the day to come when this disease is more understood by all, especially the doctors whom we rely on to help us get well.

I hope you’re winning your battle with this disease.

BLESSINGS!!!!!!!!

[pennyannie in reply to Rosebud1955]

Well you have been going round this particular circle since 2017 and it doesn't appear you have been able to find a comfortable level of wellness with the synthetic T3 and T4.

NDT is perfectly safe and 1 grain / tablet contains, amongst other things, all the same known thyroid hormones that we have lost :- T1, T2, T3, T4 and calcitonin.

Most 1 grain / tablets contain 38 T4 + 9 T3 and this 1 grain is said to be as powerful as 100 mcg of T4.

As you can see, it is of a fixed ratio of 4 to 1 - T4 to T3 - and this ratio suits many people very well, but if this ratio isn't " spot on " for your needs, you can add either a little T3 or T4 to the NDT. as you fine tune your ideal dose.

I find the NDT much softer on my body, and without the spikes and turbo charge I felt on synthetic T3 and T4.

We are all different, and starting at different places with differing health issues.

All you can do is try, and your are fortunate in that you have been offered some medical support, as many of us on here are having to self medicate as Natural Desiccated Thyroid is not well understood and or encouraged within the mainstream NHS service.

[Rosebud1955 in reply to pennyannie]

Thanks, I hear you!! I should count my blessings that I have all these options. I will consider the NDT option after my supply runs out, after my next blood work in February. I don’t mean to be a chronic complainer, but I’m just frustrated as I’m also dealing with two other chronic illness which can sometimes take a toll on the body.

Thanks to you and others who are so helpful with your advices even though your have your own issues.

[Lora7again]

I would change your Doctor if I was you because he or she does sound very competent. I walked out on my Consultant because he offered me counselling for Graves' disease stupid man and he was supposed to be a expert.

[Rosebud1955 in reply to Lora7again]

Thanks!! I’m thinking of doing just that. The problem is that, they all see to have attended the same medical school. I’m partially self medicating, he writes the prescriptions, order the blood work, and I tweak the pills. I’m sometimes a bit nervous because I don’t want to make mistakes. It took two years to get a cancer diagnosis and I’m now mentally and emotionally drained. I’m not always strong enough to battle with them. I sometimes run out of pills, that’s why I had two Endos at the same time. That’s how I managed to get enough pill to be able to tweak. I fired the one that was very arrogant, so now I only have the one. This one is very cooperative, so I stick with him. I’m dying to feel well enough to be out and about, but I will keep on fighting like all the others here.

Thanks for taking the time to reply.

[Lora7again]

I cannot see anyone being nasty on here ... what do you mean?

[Marz in reply to Lora7again]

Bit of confusion higher up when VocalEK replied to Bronagh and Rosebud replied to that as she would have received an alert and thought it was a response for her ....