A brief history first: I'm 58 and have been on Synthroid for 30 years with no problems. My FT4 has always been mid range, but FT3 was on the bottom of normal when my last doctor started checking it in 2012. He was an open minded general practitioner, but never addressed the FT3 and now has retired. Last year I started feeling exhausted all the time and thought maybe my thryroid might be the culprit. Did my research and figured out my labs were off with an abysmal FT3, but I had no doctor.
So I finally got an appointment with a highly recommended endo 3 months ago. On the first visit, she did seem to be progressive and was not following the old T4 only regimen. She noticed my FT3 was low. In addition to the 75 mcg Synthroid, she prescribed 5 mcg of Cytomel. It hardly brought up my levels as you will see below. Then my FT4 dropped too!
I just had a check up yesterday, and she waffled about prescribing anything more because of my low TSH and definitely wouldn't up the T3. I won't bore you with all the typical endo outdated jargon she threw out at me like I sounded like I was depressed, my TSH is too low, too much thyroid hormones cause bone loss, blah blah blah. And of course the endo seemed a bit angry when I tried to give her the correct information in a nice way. She finally decided she would increase my Synthroid to 88 mcg and continue the Cytomel at 5 mcg. I have to wait 7 more weeks to retest labs.
I don't look or have symptoms of a typical hypo patient( which the endo pointed out numerous times.) I am not overweight and not constipated, but I am extremely exhausted from noon on, have half eyebrows, a serrated tongue, and worst of all, for the last 6 months, I cannot fall asleep most nights without help, feeling wired or 'adrenalized'. Lately my jaws hurt from clenching them shut. Below are my labs from several dates:
July 2016 I was on Synthroid 75 mcg every other day, 50 mcg every other day. 5 mcg Cytomel:
TSH 0.57 (0.40 - 4.50 miu/l)
FT3 2.5 (2.3 - 4.2)
FT4 0.8 (0.8 - 1.8)
Even my FT4 is low now!
September 2016 after I was on Synthroid 75 mcg every day and Cytomel 5 mcg for 6 weeks:
TSH 0.57 (0.40 - 4.50 miu/L)
FT3 2.7 (2.3 - 4.2)
FT4 1.0 (0.8 - 1.8)
Other labs done earlier this year:
B12 871 (200 - 1100) I take 1000 mcg a day
Ferritin 59 (13 - 300 ng/ml)
Iron 74 (35 - 175 ug/dl) I am not on iron supplements.
TIBC 278 ( 250 - 400 ug/dl)
Folate 17.8 ( 9.1 - 30.9 ng/ml)
VitD 55 (30 - 100 ng/ml) I take 4000 iu of D3 every day and this level has been rising.
I am extremely disappointed in this new endo. She has become condescending to me now that I've questioned some of the things she told me. I'm doubtful that this new regimen of Synthroid 88 mcg and Cytomel 5 mcg is going to bring my labs up enough for me to feel better. And, I doubt she is going to prescribe any increases in the Cytomel and maybe not even the Synthroid due to the low TSH. I'm leery of self medicating, but I feel like that is going to be my only option unless I can find a better endo. What happened to doctors to listen to you and are aware of the latests studies about thyroid treatment?
Should I just keep on for the next 7 weeks with this new increase in the Synthroid and see what happens? Or should I start self medicating with more Cytomel? i'm at wits end and don't feel good.
Thank you all for helping me to be as informed as I have become!
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Rivergirl
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Hi Rivergirl, After years on one dose I had to double my dose later in life. You are not taking enough of anything. Don't be afraid to add to your personal regimen. You won't do yourself any harm and you might just feel much better. Do you want to stay with Synthroid? Your ferritin is so low, it can hardly convert the little bit of Synthroid you are taking. Adding the T3 may have caused T4 to lower. You can either increase Synthroid or add more T3. So you should try adding an iron supplement (four hours away from any thyroid hormone). Please don't be afraid of increasing what you take whether or not you discuss this with your Endo. (I wouldn't.) They are not that scientific about it and I think the helpers here give better advice.
Thank you Heloise. I thought staying on Synthroid and adding T3 would be simpler than switching radically to the natural thyroid hormone. It seems a lot of people have problems adjusting the natural hormone.
Though my ferritin is low, I have repeatedly been told that I don't need more iron by various doctors. If I start supplementing iron on my own, when should I retest my ferritin?
I am definitely considering adding more T3, but I know the endo will freak out with the low TSH. She has turned out to be so arrogant and close minded that I'm thinking I'm going to have to find another one anyway.
It takes quite a while to raise ferritin levels. This can be due to low stomach acid which you need for demineralization and also to break down amino acids. As you age and are hypo, your digestion slows down. These are the levels you need from STTM. stopthethyroidmadness.com/l...
Thank you Heloise. So much information! I've been reading all these things for months and I think some of it is starting to come together. It's so confusing though. I'd love to have a physician who was knowledgeable and would work with me as a team. I'm spoiled because I used to have one like that, but he retired. I realize we all have to take responsiblity for our own health these days, and I'm trying!
Rivergirl, just keep telling yourself that you can do this for your own well being. I know we would rather leave it in the hands of a professional and honestly as you watch what the profession is doing to people these days, it's a dangerous plan. These modern drugs are taking a toll on people's livers and kidneys. The statistics don't lie that many people under doctors' care are dying because of it.
This man is a great teacher and explains the connection between thyroid and adrenal glands. If you don't have Hashimoto's, it may be easier to improve your condition.
Yes, I think so too. And so did my endo, but then she freaked out after the little bit of T3 that she had me on plummeted my TSH. We all know that's ok, but apparently she hasn't figured that out.
ii don t think your endo doesnt know how to read labs on people on t3..i would consider going to a nature path dr that does know how or ask around in your area for a different dr...they dont have to be endos..
i have had several drs do the same thing.....not alot of schooling into hypothryoidism and especially using any t3 meds...they dont even know the test that was created was for t4 only meds .....so they get confused.....in fact i just changed drs and she said she wanted to keep my tsh at 1 and i said....with t3 ? hence i know it suppressed the tsh so you have to look at ft4 ft3 and so i will find out if she knows her stuff or winging it.....and if she is winging it ...i will be looking for a new dr .....too
The only ways that I know to get round this problem long term is by radically changing diet, or to take NDT. I've done the former as a little thyroid hormone goes a long way by excluding gluten and taking several supplements (I didn't have a bad t4-t3 conversion problem). The upside of removing gluten in the long term is that my other autoimmune problems (IBS) have gone away, my skin looks great and I've lost weight. However, a friend has sourced NDT and uses that and had a lot more energy almost immediately.
In the meantime, try taking N-A-C and Magnesium and Taurine at bedtime to help you sleep.
Hi Hlab35. I did go gluten free for 6 weeks and didn't notice any change. I realize that probably wasn't long enough. I don't have Hashi's so I thought maybe that eliminating gluten wouldn't help me, but I have cut WAY back in gluten intake.
I haven't ruled out trying NDT, but I thought adding T3 to Synthroid that I had taken successfully for so long, would do the trick. Now both my T4 and T3 levels are way low! Yikes!
Thanks for the sleep aid recommendations. I already take magnesium but not at bedtime. I hadn't heard of N-A-C or taurine, but I'll look those up.
I take 115 mg with evening meal and try to eat plenty of dark chocolate, eggs and spinach! If I've got headaches, back ache, or cramps / inflammatory pains I take more.. lunch and breakfast. I don't take extra calcium at all, because my diet has an excessive amount. Vitamin D and K2 mk-7 help with calcium absorption into the bones.
Thanks HLAB35. I quit taking calcium too when the latest research questioned the negative effects of supplementation. I'm currently taking 150 mg magnesium glycinate with breakfast and dinner.
I also take K2 and D3! I've been diagnosed with osteopenia but would NEVER take those drugs they have for that.
Thanks! Talking of osteopenia, my mum, who unfortunately was in awe of her GP, did take the drugs and she now takes Lansoprazole for the damage they caused her digestive tract.. She still would rather hear anything from them rather than me as she doesn't like self medicating and the internet etc.. I think it's a generational thing.
I can be no help as just starting on my journey, but do hope you get somewhere. How frustrating all this is!
I didn't realise clenching your jaw could be a symptom - my dentist has just given me (at vast expense) a mouth guard because I was getting jaw pain and she said my muscles and face are swollen where I'm clenching and grinding my teeth at night.
Hi LolAp! I don't know if jaw clenching is a hypo problem, but mine started around the time my thyroid levels started dropping. My jaw stays sore and I notice it constantly that I'm clenching! I was thinking about getting a mouth device too!
Just re-read this thread and realised that you may also benefit from reading this..
"There have been limited studies on supplements that can help alleviate TMD. However, one study showed that N-acetyl-cysteine (NAC) helped to alleviate oxidative stress on TMJ cells. (8) This has yet to be studied in animals or humans, but it’s likely that supplemental NAC may reduce the oxidative stress associated with TMD and help to relieve symptoms."
So NAC may help you. If you read the article in full, you can see why there's a connection between underactive thyroid and TMD (Temporomandibular joint disorders) - it seems that having stressed adrenals, which you get if you're under-medicated, can be behind it.. so there is a link!
You can have it as a supplement too - it smells a bit of rotten eggs though, so keep it cold!!
I think you get a lot of it in chicken broth which is probably why it's been a cure-all by some populations for centuries and great for thinning and clearing mucus.
TSH is not too low. It's interesting that even though your dose increased, the TSH didn't.
Don't know if this is what you did , but when you get tested get the blood taken early as possible and take your meds AFTERWARDS. You need to be on a higher dose of Synthroid. I doubt that a mini increase to 88 mcg is going to do it for you.
Hi gabkad! I totally agree with you about that mini dose increase of Synthroid to 88 mcg not working to raise my low level of hormones. I wonder why the endo didn't raise it more? Maybe she's trying to do it in small increments, but in the meantime I have almost 2 more months to wait before I see her again. So frustrating!
I did not take my meds on the mornings I had my labs drawn. Luckily, I learned that from this great forum! However, all the other 30 years I took Synthroid, I always used to take my med when labs were drawn. Maybe that skewed my results all those years!
I'm the same age as you. Went from 112 mcg Synthroid to 150 mcg but slowly. When I did a 25 mcg jump, I got hyper symptoms: global anxiety and booming heart. So going up by 12 mcg increments isn't a bad idea provided the endo is prepared to continue raising.
I used to suffer a lot with sinus problems at night, but N Acetyl Cysteine seems to have helped as it loosens mucus without having the stimulating side effects of a decongestant. It's also good at numbing glutamate receptors in the brain which helps us sleep. (Caffeine does the opposite.)
If your gut isn't perfect at digesting meat and fish then you may be deficient in NAC (an amino acid) which can indirectly lead to insomnia. Our bodies need glutamate to stay awake and alert, but not at bedtime! Others also recommend magnesium as it's a muscle relaxant and good for restless legs etc.
Thank you HLAB35! I look forward to reading that. I had a facial massage a few days ago, and she massaged out the spasms in my jaw muscles. You wouldn't believe how painful that was!
My nose often stops up at night, so maybe that N Acetyl Cysteine will be helpful for me for that as well as sleep aid. I've tried SO many things!
Oh wow, look what I've just found.. about your jaw problem (TMD) ... and NAC!!!!
"There have been limited studies on supplements that can help alleviate TMD. However, one study showed that N-acetyl-cysteine (NAC) helped to alleviate oxidative stress on TMJ cells. (8) This has yet to be studied in animals or humans, but it’s likely that supplemental NAC may reduce the oxidative stress associated with TMD and help to relieve symptoms."
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Update - Thyroid Test Results Requesting Dosage Increase
Thyroid Test
what's my T4 "problem"
