My friend suffers from what her doctors say is fibromyalgia. She has been in especially severe pain following a bad car accident over a year ago. So many of her symptoms mimic those we know from hypothyroidism and she has been getting so much worse....accelerating hair loss, swollen, dyslexic, sleeplessness, severe depression, brain fog and pain that is so bad that she is on disability and sometimes simply cannot function at all. She is on a combination of drugs, including some Synthroid.
She's been told that her TSH is fine, but I've done some research into the connection between fibro and hypo found several papers suggesting that there is one. For about a year I've been encouraging her to get her FREEs tested. Without doing so, her doctor added a small amount of T3 after I told my friend how much I had been helped by it, but lowered her Synthroid at the same time. My friend felt slightly better, had a little more energy at least but after more blood tests the doc said her T3 was too high and lowered it. My friend has been sketchy about the labs....it doesn't help that her memory fails her, so I don't know what tests the doctor based her decision on but my friend has gotten SO much worse and has alarming new symptoms.....she has started dropping things and also falling without warning and has injured herself badly several times, breaking glass, cutting herself, bruising badly and possible concussion. She is terrified, says she is not dizzy or faint.
My first thought was MS, but I did a little more research about fibromyalgia and found that this has happened to other patients, sometimes as a reaction to Flexeril. Other patients said they coordinated falling with extreme episodes of brain fog. There were other suggestions of atonic seizure aka "drop attack". But I persisted in begging her to have her doctors test her FREEs for hypothyroidism.
Today she sent me her labs, which were done on October 15th. It seems to me that she is definitely hypothyroid. I am not saying this is the sole reason for her physical problems, but certainly it has to be a part of it. Does anyone else have any experience with this type of problem ? My friend has a new grand child and is supposed to fly quite a distance to visit for Thanksgiving, but now is afraid to fly or hold the baby. The lab ranges are unfamiliar to me.
TSH 4.77 H .465 - 4.58
FREE T4 .55 L .59 - 2.19
FREE T3 2.85 2.77 - 5.27
T3 Reverse 13
Her rT3 ratio is 2.2, which is good. But obviously her other labs, including the T3 imho, are in the dumper. What should her target points be for T4 and T3 ? Can someone do the math for me, I seem to be having a brain block myself ! I know that T4 should be around 1/2 and T3 around 2/3, but for the life of me, I can't make the calculation. If someone could instruct me, I will write the formula down for future reference. Deduct the low from the high and then divide and add back to the lowest range ? DOi. I feel stupid. I think her doc should give her the Hashi's tests too. which ones are currently recommended ? The only other abnormality is low eosinophils, which seems to be not that much of a big deal. I don't know if she is taking steroids, which would account for that.
The post is missing what dosages of thyroid meds have been done exactly - and what time frame we are talking about when the introduction of T3 meds came and how much.
Usually when a T3 med is now added a different approach of testing should be considered = more frequent testing on all the labs + the increase or decrease of T4 and T3 meds to help find optimal and stable levels to begin her healing.
T3 meds is a very quick reaction for the body and we have the idea that once we immediately feel better - that's it! - Most often that is definately not the case for thyroid meds or even the entire body. In real spectrum, when the body has had a low thyroid function for a long period the entire body is weak and will not be optimal. The longer its held at a slow function the more things go wrong and symptoms of the disease will become more intense. The body screams for T3 hormone and when it finally gets a medication started, it almost freaks it out where it will quickly use it, thinking "I've got to take what I can get because it may not be here again." It's a process of the body finally being satisfied knowing the T3 hormone will consistantly be coming in so it doesn't go into "feast or famine" mode all the time. Once that phase is over, it's THEN when the symptoms start to disappear and the body really goes into a healing mode to make her feel better.
Constant monitoring of the labs and tweeking her medication is really critical. I really believe in the "feast or famine" timeframe, lab testing should not go more than 6 weeks passed until she levels off finding her correct dosages along the way.
Fibro really is a term that is exactly as Chronic Fatigue Syndrome. Its the "syndrome" word you must define and know it is not a "condition" but a spiral of events based off a real illness = like thyroid disease. Chronic Fatigue is exactly how our minds define and break down the meaning. "Exhaustion" - so in order to end exhaustion, she must pay close attention to her activity and eat exceptionally well to end the fatigue and allow her medication to work. If you constantly fight fatigue, meds don't work. No matter what.
Your friend's thyroid hormone levels are really low. For the ranges listed, midrange for FT4 would be 1.39, and the upper third of the FT3 range would start at 4.44. As Stella explained, the important thing is to get her on a regular regimen of testing and increasing her meds every 6 weeks until she gets to a level that relieves symptoms.
Thank you Stella and Gimel, this is exactly what I told her too, and Mel, I finally had made that exact calculation for levels, so thanks for reaffirming me !
I have asked her to email her doses and I will post as soon as I get them. I've told her to get tested for gluten allergy and B12 too, as well as ferritin and iron and Hashimoto's. And since she's had 5 serious falls in the last month, I don't know what kind of doctor hasn't sent her to a neurologist already. Same doc lowered her T4 when she put her on 10mcg of Cytomel, without labs, instead of adding to the Synthroid that hasn't seemed to help. Then lowered Cytomel to .5 for no discernible reason before the labs I posted were done.
My friend just got back to me. She is currently taking 75 mcg of Synthroid and .5 mcg generic T3. This seems quite low, given her labs. She had been on 100 mcg Synthroid only for quite a while, which was lowered when her doc started her on 10 mcg T3 as initial dose. Then she dropped the T3 to .5 mcg but apparently didn't raise the Synthroid again. Grrrrrrrrr.
I know she takes other drugs for the Fibro pain, Flexeril for one. I will ask for a complete list. Thank you so much for the help. I am very worried about her, and am so far away. We all know how hard it is to think clearly and process information when in deep brain fog. Very frustrating for me and I'm sure for her too.
Did you really mean .5 mcg of T3, or 5 mcg of T3? Even 5 mcg would be low, with her labs, unless that was just an interim dosage, on the way to a higher dose to relieve symptoms. However, since the doctor reduced from 10 mcg, I am not very hopeful that this doctor is what she needs. Where is she located?
Whoops sorry, yes 5 mcg. I so agree, very low. She wrote me earlier that an endocrinologist had reviewed the labs I posted above and made NO comment to her about them. Good lord, it SAYS right on the lab report that her holy TSH is high and T4 low, what more did he need even if he doesn't believe in T3 ??? Her PCP put her on 10 mcg as an initial dose, then called my friend while she was out of state on vacation and told her to cut back to 5 mcg immediately because it was too high, with no explanation. I don't get it either. And my friend seems befuddled by brain fog much of the time and doesn't seem to be able to be as aggressive as she needs to be.
She's in Boulder, Colorado. Any suggestions ? I get the feeling that her doc (who's basically treating her for fibro) doesn't get it at all. I've asked my friend to give me a copy of the labs she had before this one so I can compare.
I went to a new gynecologist recently who's a specialist in female hormones. She understands all about the FREE tests and is completely on board, but when I told I haven't even been testing my TSH any more because it's always below the low end of the range (fine by me), she told me that the national professional association for endocrinologists has informed its members that "they can lose their licenses if they allow their patients' TSH to stay below the low end of the range". She thought that was ridiculous and didn't agree, but said that's what the memo said and that's why it's so difficult to find an endocrinologist who will prescribe T3 or deal with symptoms over the holy TSH. Can this really be true ?
I use these lists by calling those of interest and saying that I was considering making an appointment, but before doing so I would like to ask a nurse a few questions. That almost always gets a nurse on the line, or at least a call back from a nurse. The questions I ask are whether the doctor is willing to treat a patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. If the nurse seems at all hesitant about this question, then I also ask if the doctor automatically wants to reduce thyroid meds if the TSH becomes suppressed below range, even if the patient does not have hyper symptoms, and FT3 and FT4 are well within their ranges. The last question is whether the doctor is willing to prescribe T3 type meds like Armour and Nature-Throid and Cytomel.
From the answers to these questions I have found that you can separate the prospects from the suspects. LOL
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