I have Hashimoto's disease. I was diagnosed when I was 18 and shortly after, I was put on Levothyroxine. I'm currently on 150 mcg of Levothyroxine but I don't think it's helping. Actually I feel awful. Struggling with severe depression, (antidepressants seem to be ineffective), extremely dry skin, dry hair, hair loss, tiredness, achy joints, cold hands and feet.
On most days I feel like I'm 80 and about to die.
My test results:
TSH 6.09 mIU/L (0.27- 4.2)
Free T4 16.9 pmol/L (12.0 - 22.0)
Free T3 3.8 pmol/L (3.1 - 6.8)
Thyroglobulin antibody 307 IU/ml (0-115)
Thyroid Peroxidase Antibodies 276 IU/ml(0- 34)
I had a blood test recently for Vit D, B12 and Ferritin but it all came back normal. But I'm a vegetarian so I do take B- complex, vit D and Iron supplements every day. Also, 2 years ago I was tested for Celiac disease and it came back negative.
To complicate things further, I'm 45 and I think I might be entering the peri-menopause. I've started missing periods (2 months so far).
5 years ago I saw NHS endocrinologist, but I didn't find it very helpful. (Actually I saw 2 different NHS endocrinologists). I had a blood test, TSH was too high, the thyroid antibodies were very high so I asked for a prescription for Liothyronine but he refused to prescribe it. He explained to me that there was not enough evidence that T4+T3 therapy was more effective to treat hypothyroidism than T4 monotherapy. I didn't really agree with him. So in the end my Levothyroxine got increased to 150 mcg and he discharged me back to my GP.
I feel that Levothyroxine is failing to reverse my hypothyroid symptoms. I would like to try T4+T3 therapy. (Maybe reducing Levothyroxine and adding a small dose of Liothyronine might help? ). I've done some research and T3 is sometimes used as the augmentation therapy for treatment resistant depression, which sounds quite promising.
I guess my only option to get a prescription for Liothyronine is to go private. But I really don't know where to go, and I can't afford to waste money.
So, does any of you lovely people have any experience with a private consultant and if so, who did you use? Would you be able to pm me?
I live in the south east but I do travel to London often.
Any advice would be greatly appreciated.
Thanks
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pl108
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Your TSH is very high for someone on 150 mcg levo. Looks like you could have absorption problems. How do you take it? Do you take it on an empty stomach, leaving at least an hour before eating or drinking anything other than water? Do you leave at least two hours before taking any other supplements or medication - four hours for some?
Was this an early morning test - before 9 am - fasting over night and leaving a gap of 24 hours between your last dose of levo and the blood test?
Your conversion isn't very good. But, then again, you don't have much T4 to convert. An increase in levo - which you definitely need - might just do the trick.
Thanks for your response. I had a routine NHS blood test taken a couple of weeks ago. TSH came back high (6.8), so I arranged to have the thyroid panel blood test via private GP in London, just to confirm and find out what's going on with my thyroid. I didn't take Levo 24 hours before the test, but I didn't do the fasting bit and it was in the afternoon.I guess next time, I'll need to order the home kit tests from Medichecks or Blue Horizon and do it at home before 9am.Not sure if I have absorption problems. I take Levo the first thing in the morning after I wake up, only with water and I don't drink or eat anything for 2 hours after. I take my vitamin supplements in the afternoon, so they don't interfere.
I think I might have conversion problems though. From what I read on this forum and elsewhere, for thyroid levels to be optimal, a fT3 should be in the top quarter of the range and a fT4 in mid-range or a little higher. My fT3 seems to be a bit low. There's a possibility that a fT4 is being for whatever reasons converted into reverse T3. That would explain all the the hypothyroid symptoms that I still have. I think adding a small dose of Liothyronine could help with this. I think even NDT would be better than just Levo monotherapy. But it's close to impossible to get a prescription for NDT on NHS. I think the high cost of Liothyronine and NDT has something to do with that. It might be easier to get a prescription for Liothyronine or NDT from a private endocrinologist, but I don't know where to go for a consultation.
Also, I think my extremely high thyroid antibodies should be reversed. I don't know what's the best treatment for that either.
Not sure, if it's related but over the past couple of months I've had a strange sensation in my throat. It feels very tight, like something is stuck in my throat and I have difficulty with swallowing. I probably should arrange to have a thyroid ultrasound fairly soon.
You don't say what time in the afternoon, but the odds are that, had you had the blood draw before 9 am, the TSH would have been even higher. And, as doctors tend to only look at the TSH, it's best to catch it at its highest - or as high as you can get it.
I think I might have conversion problems though. From what I read on this forum and elsewhere, for thyroid levels to be optimal, a fT3 should be in the top quarter of the range and a fT4 in mid-range or a little higher.
Ummm... no, pretty sure nobody's said that. Optimal is not a number, it's a feeling. When you feel well, symptoms gone, that's where you're optimal, and it will be different for everyone.
But, in any case, unless you're taking lio, your FT3 is going to be lower than your FT4. Those that have FT4 in the top quarter and the FT4 mid-range, are those taking T3 with their T4.
There's a possibility that a fT4 is being for whatever reasons converted into reverse T3.
There are many many reasons for high rT3, and only one of them has anything to do with thyroid. And, that's when your FT4 is too high - up the top of the range, or over the top. Your FT4 isn't high enough to be converting to rT3 - or I should say excess rT3, because some of it will always be converted to rT3, that's the way it works. But, don't worry about rT3, it's a red herring, and doesn't do any of the things some people claim it does.
Also, I think my extremely high thyroid antibodies should be reversed. I don't know what's the best treatment for that either.
There is no treatment for that. Oh, some people claim that they have reduced their antibodies by going gluten-free or taking selenium, but as antibodies fluctuate all the time, the proof is missing. But, even if you got rid of the completely, you would still have Hashi's, because the antibodies are not the disease, and your immune system would continue to destroy your thyroid, antibodies or no antibodies. The antibodies just clean up the mess left after an attack.
Not sure, if it's related but over the past couple of months I've had a strange sensation in my throat. It feels very tight, like something is stuck in my throat and I have difficulty with swallowing.
Sounds like your thyroid is a bit swollen, which isn't surprising, given that you have Hashimoto's Thyroiditis. That's what 'thyroiditis' means: swollen thyroid.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
As coeliac result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thanks for your response and thanks for all the helpful info. I weigh 72 kg, so I think I'm on a higher dose than guidelines. My Levothyroxine used to be from Mercury Pharmaceutical but over the last couple of years all the tablets I've been getting from my pharmacy come from Teva. I didn't even realize there was a difference, up until now.Lactose Intolerance - that's a very good point.
I might have mild lactose intolerance so I'm normally avoiding all dairy, apart from very occasional chocolate. But unfortunately, I'm not on a gluten free diet, which was pointed out to me before as a crucial think when having Hashimoto's.
I wonder if I have absorption issues. My digestion is really not good, probably low stomach acid due to Hashimoto's. I usually take a blend of high- strength digestive enzymes with meals to help with digestion. I've also had candida - yeast infections on and off for many years.
There's probably a strong link between my diet and my very high thyroid antibodies. I will have to look into that.
So if your on a lactose intolerant and on lactose free diet you will need lactose free levothyroxine
Tablets - that’s either Teva or Aristo - Aristo only available as 100mcg tablets
You may need liquid levothyroxine…..again something to discuss with an endo. Liquid levothyroxine can’t usually be initially prescribed via GP (because it’s expensive)
Very difficult to maintain good vitamin levels with Hashimoto’s, but especially if vegetarian
Hi - I have had a similar experience to you but was diagnosed 6 years ago at the age of 42. I first saw my endocrinologist privately and she put me on a very small amount of liothyronine after thyroxine didn’t work on its own. I now take both. Her name is Dr xxxx and she works from Hammersmith Hospital. I now see her on the NHS there. I know she is has dealt with allergies eg lactose intolerance too (through a friend). Liothyronine is very expensive though.
Thyroxine on its own didn’t work for me. I had all of your symptoms (dry skin, hair falling out, puffy cheeks, couldn’t walk up the stairs etc) and now take HCL for low stomach acid. I have also tried NDT which works well for some people, but the T3 element wasn’t enough for me.
I hope that helps!
<Edited by admin to remove doctor name as we cannot name doctors on the open forum>
I've seen <redacted doctor> privately this week at the London clinic- Harley Street. But it was a completely different experience you had with her. She wasn't very understanding. I've really tried to communicate how ill I feel, constantly exhausted, weak,joint pain, dry flaky skin, hair loss, constipation and feeling cold all the time, depression...(Also,I brought my own blood test results to show her). I've said that I wanted to switch to NDT or to add a small dose of Liothyronine because Levothyroxine is failing to reverse the hypothyroid symptoms I'm having. But it was like talking to a brick wall. She said that 90% of patients do really well on Levothyroxine only. She said that I was feeling ill because my TSH is too high and I needed to get it under 2. (My TSH at the moment is 8.0!) She said that all I need to do is to increase Levothyroxine to 175mcg from 150mcg and that will solve my problems!! I was speechless. It was completely pointless to see her. Actually, it was quite shocking, considering how expensive it was to book the consultation. Now I can see why so many people on this forum are so bitter or even cynical about seeing endocrinologists and doctors in general (even privately) and decide to self medicate and have their blood tests done via Medichecks etc. Unless I want to spend the next 20 years in bed, unable to function, I might have to do the same.
[ Edited text to redact the doctor's name as we cannot name doctors on the forum. ]
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