I am hoping I can get some advice. I have been on levothyroxine for 6 years. First diagnosed when I turned 30 and was investigated for fertility issues. It took me one year to conceive my daughter (conceived after only a month of being on levo). I have never felt entirely perfect on levothyroxine and over the years after having had two children (3 and 4 year old) it has got worse. My free t3 levels have always been on the lowish side no matter the dose I am on.
My two main issues are chronic constipation, been treated for fissues etc and now on lactulose daily and still can not go easily (I take a high dose of magnesium cheleated at night, doctors best brand). And Chronic Insomnia. The insomnia can get so bad I do not sleep at all for days and it can make me feel depressed. Yet I am a happy person, I work three days a week and looks after my young children and generally can say I look well and I am a healthy 9 stone and 5ft 5. This is the problem I look well but I am suffering.
I asked my doctors last summer to reduce my levothyroxine from 100/75 alternate dosing to 75mg as the insomnia was chronic. I did go and see an endochronologist about it but she was so rude and suggested the insomnia was due to stress and suggested I see a psychologist. Yet I know its chemical. Anyway the proof is I reduced the dose to 75mg and the insomnia went away and I started sleeping like a baby, in fact so well I looked forward to sleep again BUT my bowels more or less stopped working and I had to go into hospital and was given high grade laxatives. Anyway it was then increased again and the bowels worked a bit better but not great and once again I am not sleeping. I have noticed that I sleep well when my free t4 is mid range and I feel best when my free t3 is around 5 or slightly higher as I realised with the one result tested below taken after my second child.
My question is this:- I am now looking at a high TSH despite high free t4 and middle to low Free t3 result. I have the insomnia back but I don't want to drop my dose because of my constipation.
I do not have a lot of money. My endo didn't want to know about the insomnia and so I am now left in the realms of self treatment. I want to be well so I can look after my children and after too many sleepless nights everything suffers.
Do I purchase some t3 online. Drop my Levo down to 75mg when I didn't have the insomnia and add in 5mg of cystomel? Do I take it together in the morning and restest privately in 6 weeks time. I am nervous about doing this but I want to be back to normal again! Thank you so much for taking the time to read this and your advice.
I have kept track of all of my results
LAB RANGES TSH Free T4 Free T3
0.3-5.0 9 to 24 3.5-6.5
21st Jan 13 125 TSH 0.03 Free T4 23.5 Free T3 6.4
Feeling v well but reduced to 100mg by doc. Taken three months after having baby
28th Mar 13 On 100mg - TSH 0.03 FREE T4 17.1 FREE T3 4.1
10th May 13 100 0.59 15.1
25th June 13 100 1.3 15.1
15th Aug 13 100 0.77 19.8 Tried 100/75mg alternate dose due to insomnia issues - Varying days
4th Nov 13 75/100 TSH 1.0 FREE T4 16.8
4th Feb 14 75/100 1.2 FREE T4 15.7
1st july 14 75/100 TSH 1 FREE T4 16.6
Apr-15 75/100 TSH 0.69 FREE T4 17.9 FREE T3 4.4
Jun-15 75/100 TSH 0.11 FREE T4 21 Dropped dose to 75mg due to insomnia
Jul-15 75 TSH 1.6 FREE T4 15.3 FREE T3 3.7 Insomnia gone, sleeping well! but constipation is now chronic. Retested Antibodies and both negative for thyroid disease.
Oct-15100 TSH 2 T4 Not taken T3 Not taken. Insomnia back and still constipated
Jan-16 100 TSH 3.43 FREE T4 22.7 and FREE T3 4.6 Private test paid for - told over replaced
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Bubbap
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Hi. Sorry to hear you're having a hard time of it. There is no reason for the endo to be rude to you when you have what sound even to a layperson like quite legitimate thyroid-related issues. I don't know why so many of them are like this.
I'm finding your results a bit tricky to read. Could you maybe reformat with spaces in between numbers and clarify which results are which?
Off the top of my head it sounds like you're just hanging on to the t4 and not converting it to t3, so it does sound like t3 might help you. Even when my results indicated perfect t3 and t4 readings (high in the range) I still felt unwell on t4 only and adding a little t3 sorted out the constipation and bloating straight away.
Thank you for the two replies above. I have modified my post so the results are a bit clearer. The endo was not very nice to me she basically told me my sleep was nothing to do with my thyroid yet on a lower dose of T4 I do not have a sleep issue and I do not feel depressed at all even with these health issues. I am generally a very happy person but this condition is wearing. She was not interested at all and told me I was fine. I have therefore tested my own thyroid privately but it is expensive and I now feel I need to go down the self treatment route but need some guidance on how to start out given my latest results? I know we are not doctors here but a lot of you have been through the same things and I just would like some general guidance would be appreciated.
I do take a vitamin D everyday as I was found to be deficient a few years back and I take a multi vitamin in the afternoon with extra vitamin C, atleast four hours after my levo which I take at 5.30am in the morning so its well away from breakfast and my morning coffee. Currently on 100mg. Thank you
I agree, you're not converting. And it could be due to nutritional deficiencies. But...
Did you get tested before starting the vit D? If so, what was your level? And how much are you supplementing? If not, how did you decide your dose?
Multi-vits are a bit of a waste of money - they are just for healthy people, that Don't need them! They do not contain enough of anything to treat a true deficiency, and they do contain things you Don't want, like iodine and calcium.
The way to go about it is to get your vit D (if not already done), vit B12, folate, iron, ferritin, zinc tested, and supplement where necessary, with a dose that corresponds to the deficiency. Otherwise, it's all just a waste of money!
My vitamin d was 51pmol but that was after I was told to supplement by my doctor who said my levels were low but not bad and I was taking 1000 vit d at the time. I don't know what my level was beforehand but my sister is on tablets from her Gp she was severely deficient and my mum supplements as well. I now take two two of the tablets daily as i know it's an important one. I also take one of the dissolvable vit c also 1000. My doctor will just look at me like I have two heads if I ask for folate etc to be tested. Is it expensive to do this privately as I think I will just pay for it. I really feel like they don't believe me when I say I think my bowel problems and my insomnia is caused my thyroid. They just ask me if I have stress and yet I'm v happy despite all these issues,
The insomnia gets me down not the other way around. they suggest amytriptyline and I'm on lactulose for the bowels. Thank you grey goose for your advice and suggestions.
I am so humbled by all the kind responses I have had so far.
Have you tried taking magnesium? That might help your bowels. Magnesium citrat, about 400 mg a day. Best taken at night. It also works with vit D3, so might make you feel a bit better too.
And if you're taking vit D3, it's good to take some vit K2, because D3 increases calcium levels, and K2 makes sure it gets into the bones, and not the tissues.
I've no idea how much private testing costs. I believe they talk about that on the main page of TUK. If not, ask another question and somebody will tell you.
Doctors know absolutely nothing about thyroid symptoms or nutritional deficiencies. They think B12 is irrelevant, but it's actually very, very important. Do get it tested if you can. Hypos are usually deficient.
Thanks again! When I was on the 75mg and had improvement with sleep but problems with my bowels I thought oh no what o will order some natuthroid 1/4 grain and add it to Levo. Bowels improved after first day but after 5 days I felt muscle pain all over my body and stopped it. That's why I'm thinking t3? Sorry I'm a complicated case obviously and I'm willing to do
Anything to get back to normal. I really need to be there for my kids they are so young and don't deserve to have a mum who is constantly
Battling these health issues but I will not give up. I realise the doctors and endo is just interested in tsh and Levo
Ha, we're all complicated cases! So many people here are going through exactly the same thing, which makes it all the more ridiculous that the endo didn't want to know. The ndt might be worth a better (longer) try or you could try reducing your levo and adding in t3 and if you feel better (you are almost certain to) you may eventually want to drop the levo altogether.
As an experiment, change the time you take your Levo to see if it impacts on your insomnia :
a) If you currently take it in the morning, try taking it instead just before you turn the light out at night.
b) If you take it at night, try taking it in the early morning instead.
c) Some people are not compliant with taking their levothyroxine. In cases like this, doctors may insist on the patient being observed taking a whole week's worth of levo at once, once a week. Please note, I am not suggesting that you are not compliant. If weekly dosing works for some people perhaps you could try it yourself. This is a risky suggestion because I have no idea if it will make your insomnia and constipation worse or better.
With regard to your constipation, you could try taking more vitamin C (which has the added bonus of also being good for the adrenal glands). High dose vitamin C causes diarrhoea in healthy people. If you take enough it should make a dent in the constipation. I take ascorbic acid powder mixed in water. It can be hard to swallow (because it is an acid), and it must be drunk through a straw to protect your teeth. Rinse your mouth out thoroughly with plain water afterwards. You could take capsules of vitamin C which are easier to swallow, but they are more expensive and also contain fillers. I currently take 5mg per day - half in the morning and half in the evening, but I've read about plenty of people who take more than that.
Your chronic insomnia may be caused by adrenal problems. When people are under-medicated or wrongly medicated it stresses the body. To keep the body going it produces extra adrenaline and cortisol. If cortisol is higher or lower than it should be at bedtime it will keep people awake. If you do get to sleep, do you often wake up sweating loads at about 4am?
You can do some investigation into your adrenal situation by monitoring your temperature and charting the results. It's a lot of hassle, but at least it is free :
Another option (which costs money) is doing this saliva test. The turn around time is dreadful - it can take up to a month, but lots of people find this test helpful :
My results are similar to yours on Levo. Low TSH, high T4, mid range T3.
I had the Regenerus Laboratory test done and discovered I have the faulty DIO2 gene. I am wondering whether this may be the case for you. Insomnia is a condition of hypothyroidism.
I had infertility, a miscarriage and two premature babies, and other common hypo symptoms, but unlike you have always carried extra weight since childhood, getting worse now that I am post-menopausal and unable to exercise at the same level as before because of osteoarthritis.
Of course it may be another reason in your case, but it might be worth considering whether you too have a faulty gene. Did either of your parents suffer from similar symptoms?
Thanks for reading my post. Yes I have problems exercising but mostly
Due to the fact I never get a good
Nights sleep so I never have the energy to exercise.
I think I might get the faulty gene test done. No history of thyroid disease in my family but my mum had arthirits and her mum died young of bowel cancer apparently she had problems with constipation all her life so I reckon she may well have been hypo but it
Was never investigated.
I hope you feel better soon!
I am thinking of going back to 75mg of Levi and adding to in some t3 as per punctured bicycles suggestion above!
Just to say it is so lovely that you have all posted some suggestion and advice. What nice people there are on this forum! More sympathy from you lot than the endo I was sent to. Xxx
Thanks for your message. I will tell you what has worked for me although there is still room for improvement. What works for one person might not work for another but with my high tsh and high t4 even though my t3 was low I reduced my Levo to 75mcg and started to sleep very well for a while and surprisingly my tsh went down to about 1.9 from. 3.4 which doesn't make sense but I think the lower dose meant my body was less stressed and I was probably converting less reverse t3 due to the previous high t4 which also came down to a normal level. After doing this for a number of weeks I then started to introduce a little bit of t3 A very small amount at first I.e 1.25 then 2.5mcg and my constipation is a million times better. The t3 definitely helped the Levo work better for me and I take it twice daily but only a very small amount once in the morning with my Levo and then after lunch. My sleep can sometimes be bad but I have seen enough improvement to persist with this. Hope this helps you. Unfortunately I only managed to do this by paying out for private tests every 8 weeks monitoring my own levels and then adjusting my dose xxx
thank you for the heads up! i'm on 150 levo and 5 t3 and I have never felt so rough on my life. I awake jolted from sleep and even if in bed for hours? I wake up purely exhausted and fatigued. please keep me and all posted because I'd love to hear how you do!
I have used seriphos and super cortisol support from now for sleep and both have helped! Maybe give them a try I think you might be suffering with high cortisol at night. Mine was off the roof high at night and the seriphos has helped a lot. Also keep your Vit c and d and b vits up! If I were you after having looked at your last lab results I would try and increase your t3 very slowly until you get them a bit higher whilst nursing your adrenals. I think your adrenals need some help mine were in a bad way. I'm no expert but hope that helps x
AGREED. I do take that vitamin c per my naturopath and I also just got word that my vitamin b12 is high so I was told to stop taking it for 30 days (just had it injected). I am positive that my adrenals are messed up... and I think even prior to my TT. I take holy basil, Ashtawanga, and some adrenal glandulars but no difference. What is this item you speak of? I'm in the US so would have to find it but you seem to be in a similar boat and I trust your feedback and experience! I would just do anything to get the last two years back of my life... y'know? Maybe wake up kinda excited once more, again...
you all are so awesome and such a great community to be able to participate in... xoxo.
If you Google seriphos by interplexus and the NOW brand super cortisol support I have found both very helpful in fact I am taking the super cortisol support at night and now sleeping - fingers crossed it stays that way. But whilst adjusting dose I find it helpful to supplement for high cortisol. hope that helps!
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