Hi everyone, I am really at a loss of what to do in light of my recent testing.
For the past year I have suffered from full body swelling- even my tongue is swollen, (myxedema) rapid cognitive decline, extreme fatigue (cannot get out of bed until afternoon), almost asthmatic breathlessness(correlates with severity of myxedema). Thinning brittle hair, panic attacks, depressive episodes which seem to coincide when the other symptoms are more extreme. Low body temperature. Muscle weakness.
Looking back, I have definitely had unusual symptoms for many years. Mainly being mild depression and anxiety, and fatigue. It seems more likely I have been struggling with thyroid issues for a long, long time. However, my tests don't seem to reflect primary hypothyroidism.
These are my most recent results:
Tsh 3.5 (0.3-3) High
Ft3 4.1 (2.4-4.2)
Ft4 2.1 (0.7-2.5)
TPOab 34 (0-150) 70-150 borderline
morning cortisol (saliva) 3.6 (3.7-9.5) low
Noon cortisol (saliva) 2.3 (1.2-3)
Evening cortisol (saliva) 1.3 (0.6-1.9)
Night cortisol (saliva) 0.9 (0.4-1) High normal.
However the hourly graph reflects the night cortisol as average.
DHEAS 7.2. Range for age 20= approx 10-27. So low. (Average is 16 for 20 years).
Estradiol 0.7 (0.5-2.2) I'm male so I heard it should be on the lower side?
Testosterone 104 range for age 20= approx 87-180. Average is 125.
Blood spot was taken at 9:55
no1 saliva at 9:40
no2 saliva at 12:37
no3 saliva at 17:25
no4 saliva at 21:40
I really feel so ill, and I am close to having to drop out of university for the second time if I don't get treated really soon and I am become more reclusive by the day.. However I am very confused by mainly how the Tsh is high while the Ft3 is at the top of the range. Since I am highly symptomatic I gather this suggests I have cellular resistance?
If i cant get treated soon I was tempted to try T3 which makes me feel uneasy but I really feel desperate as I have felt unwell for years now. I also can't afford to quit university again.
Hope everyone is well and sorry for the venty message haha,
Ben
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Your tsh goes up when your body doesnt have enough T3 and or when it has it but cant use it. I bet u r on T4 only and are not converting to the usable form T3. Ask to add T3 or change to dessicated thyroid meds which has both t3 and t4 only. Anyone with same results on deasicated might just add a little t3. Just start with 5 mcg 2 x a day. Cut back if you get palps or other hypo signs. It is beter to take 1 at night and in the morning an hour away feom food at least. Good luck!
I'm actually on no thyroid hormone at all! I read the analysis report for my results which stated that my ft3 level is normally associated with thyroid medication or hyperthyroidism! That's what made me think it must be some kind of resistance on a cellular level. I was thinking of self medicating (if my doctor doesn't agree) on t3? Do you think that sounds a good idea even though im not even on meds at the moment?
No I would not self medicate. Did they discuss being hyper? What is your pulse? Did your doctor discuss other possibilities for the high numbers on your lab? If not, I would find an endocrinologist asap. You don't want to spend your young years dealing with this! It sounds like your body isn't able to use what it is making for you. Please let us know what a specialist says.
I will talk this over with my doctor, when he replies. I wouldn't have thought it would be hyper as my symptoms are textbook hypo and my tsh is high. Yeah it is a shame as It feels like my life has been on hold for a few years. At least im making progress now and I will be stronger for it. It seems like my cells can't utilise the t3 hence the high tsh or something?
It is unusual to have high TSH and high FT4 and FT3. I think you should ask for referral to an endocrinologist to investigate resistance to thyroid hormone or TSHoma which is a benign TSH secreting pituitary adenoma.
Hmm it seem quite likely, especially with my symptoms. If i can't make progress with my endo- i might look into self medicating with t3 and monitor the progress. Especially since I need to get better to stay on my course:/
I would research RTH and TSHoma yourself because most endos are diabetes not thyroid specialists and you may need to prompt your endo to expand his/her horizons.
I may be fortunate in that i am seeing a thyroid uk recommended specialist. I even talked to him about thyroid hormone resistance! I just only hope he sees the results in this manner.
I don't know anything about TSH-secreting tumours of the type mentioned by Clutter, but you need to have it ruled out by a specialist, if you can find a co-operative one.
Your results are certainly unusual, and you are right to consider some form of resistance to thyroid hormone. The more extreme variants of the heritable resistance syndromes tend to become apparent in infancy, and their effects are devastating. These are the syndromes which tend to be researched and can be tested for, usually at Addenbrookes Hosp. It's unlikely that your problem falls at this end of the spectrum, but a few of us on the forum still struggle with tissue resistance nevertheless (I'm one of them).
I used to suggest that people contact a member of the forum for an information document he compiled on this subject, but I think he deleted his account. However, he sells an expanded version of the document as an Amazon ebook. Look up the name Hugh Hamilton.
Also, look for books by Mark Starr, an American doctor who is knowledgeable about this subject. You could also read Dr John Lowe, but his books have gone out of print since his death, and are now very expensive on the second hand book market.
I will make sure to look into all of this, I don't know about TSHoma either but will need to rule it out like you said. I'm relieved in a way that tissue resistance is likely as I have been trying to figure this out for ages! Thanks a lot for all the information you provided, it's very useful.
Hi, I don't usually comment, but I noticed that you had the TPOab drawn which is to test for Hashimotos autoimmune thyroiditis, but I did not see that you were tested for Graves disease. That might be something else to look at. Also, your symptoms correlate with autoimmune disease. I was diagnosed with Hashimotos a few years ago and it has caused so look many problems. My lab work is very seldom out of what our hospitals range is, but I have a great endocrinologist who listens to how I feel, and knows that the same lab work does not produce the same symptoms in everyone. Sometimes hyperthyroidism patients will have hypo symptoms and vice versa. Unfortunately with Hashimotos, you generally get an answer of "wait till it has destroyed itself, then we'll put you on medicine" (while having symptoms of hypo and hyper fluctuating constantly). I did that until I could no longer distinguish what was normal anymore, and now I have started on synthroid to shut my thyroid off and we can adjust blood work rather than have me unable to function with all the ups and downs. I say all this to say, not a single thyroid patient is the same, you can have opposite symptoms of what is actually happening, or symptoms of both simultaneously. Also, severe anxiety can feel like depression if it gets bad enough. That coupled with the panic attacks makes me wonder why your doctor hasn't had Graves antibodies drawn, especially with all the inflammation and swelling. In the mean time, going completely gluten free and taking massive amounts of high quality probiotics has helped me immensely. I hope you find answers soon.
You're right, I havent been tested for Graves disease. I'm sorry to hear you have also been struggling with thyroid problems, it is a pain. The main reason I thought it was more likely to be cellular resistance as opposed to Graves, is that I have full body myxedema. I thought in Graves, you only got pretibial myxedema? Maybe I'm wrong. It is interesting you can get hypo symptoms in graves too! I have had many insidious symptoms for years, but it was only until i got weird brittle, and thinning hair coupled with immense swelling and bloating that led my investigation towards hypo. My tsh has been as high as 4 but my Ft4/Ft3 has always been near the top of the range. As far as i am aware, My mother also has a high tsh and hypo symptoms such as myxedema which she though was cellulite until recently. My great grandma also had a psychotic episode in her late age under stress, which sounds to me like severe myxedema. In light of all this, I became certain that I have genetic resistance to thyroid hormone given my family's symptomatic history as well as me and my mum's 97.5 percentile tsh! Does this also sound possible to you? I will definitely investigate Graves though. I hope to get this sorted soon its very, very frustrating. Oh and also, Im male and only 20. Since thyroid resistance isnt age or gender discriminate I reckoned this made it more likely to be hormone resistance that was genetic.
I'm not super familiar with myxedema, however, just as you can have symptoms of either hypo or hyper, you can have myxedema with either hyperthyroidism or hypothyroidism whether it is autoimmune or not. Also, I don't know the full extent of the psychotic episode you mentioned, but women generally (97-98%) have autoimmune disease as the root cause of their hypothyroidism according to every study I've read. The ups and downs that fluctuate with hashimotos can mimic mental illness, especially when under stress. Just a few things to think about. I've been in psychotherapy once or twice a week for the past couple of months due to the mood swings. If we didn't know I had thyroid disease, I would probably have been diagnosed with bipolar disorder and been in and out of the psych ward rather than trying to get the underlying medical issue treated. We just started shutting my thyroid down and replacing its functionality with medication due to the havoc it's been wreaking, and although my anxiety is through the roof, my head is clearer than it has been in over a year. Just some things to think about, I don't have any answers.
I would recommend you check out hypothyroidmom.com and stopthethyroidmadness.com as they have quite a bit of information on their hands if you haven't already. I know you're male, but other than the lack of a menstrual cycle, everything else should apply to both genders
Graves or hyper wouldn't explain the high tsh though right? I thought with Graves the Tsh was super supressed as opposed to elevated? I can definitely relate to the symptoms of autoimmune thyroid disease, but then again some hypo and hyper symptoms overlap as anxiety can also occur in hypo despite the fact its more prominent in hyper. Even though my Tsh is in range in the NHS ranges, it is 97.5% percentile which is surely very rare with a high ft3. This is why I think it is cellular resistance. When i mentioned age and gender, I meant that it is rare for a young male to develop generic hypo/hyper which makes thyroid resistance more likely as it is hereditary. I have a doctor's appointment next wednesday and i was hoping to try t3 because of this. If i can't, i may look at sourcing my own and slowly increase the dosage at appropriate intervals. What are your thoughts on this approach?
If you identify with the autoimmune symptoms, I would suggest a full autoimmune antibody panel. If your doctor's not on board with the cellular resistance and you feel in your gut that is the issue, I would switch doctor's after researching. I would not, however, self medicate with thyroid hormones. Ever. I k ow there are a lot of bad doctor's, but there are also some really great ones, and sometimes it's just a matter of building a relationship and a level of trust. I would never change my thyroid medication or have my own labs drawn essentially being my own doctor. The thyroid basically affects every function of your body, and my doctor has brought things to my attention I had never heard of. No matter how good Google and message boards are, we didn't specialize in the endocrine system in school, and there is a lot there that we don't know even exists. I'd wait for your appointment, then go from there.
I will see what my doctor has to say in a few days from now. I don't suppose you know how long it takes to benefit from t3 if it is hormone resistance? I know it depends on the optimal dose for each person, but i heard the effects are almost instant.
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