Im aged 42 and have suffered with Crohns since the age of 22. Over the past year I have suffered from fatigue more than usual, I just put it down to Crohns and just struggled on as normal.
This was until about a two months ago when I had symptoms of what I thought was a nerve problem in my right wrist. GP sent me for nerve conductive tests but also for a full blood works to be done. I did not know at the time but he also requested a check on my thyroid. The results came back and via a phone call the GP put me on 50 micrograms of Levothyroxine as what he described as a starter dose.
I have not noticed any improvement over the six weeks since taking the drug and in fact the fatigue has increased with the addition of what I can only describe as severe dizzy spells.
I had a further test done this Monday and my results show that my free T4 is at 14.5? and my TSH is 6.4. This is based on taking 7 weeks of Levothyroxine at 50 micrograms. Im pretty desperate, I am self employed and have a young family so being in bed morning, noon and night is really effecting us all in the household.
I read that the reference dose of Levothyroxine is 1.6 micrograms per KG. Now I am a big lad and based on this reference dose I should be on over 180 micrograms. I have also started taking D3 and B complex vitamins as well in the vein hope they might help.
Can anyone tell me if the above reference dose for Levothyroxine is correct and if not what the dosage would normally be. Also is 6.4 TSH high? when you are already taking drugs and is my T4 at 14.5 normal?
Thanks
Drew
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We have to start on small dose (50mcg) and increase in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
When hypothyroid low vitamins are common. With Crohn's as well, low vitamins are even more likely
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Do you know if you have Hashimoto's also called autoimmune thyroid disease, diagnosed by high thyroid antibodies. Essential to get tested if not already done
Reading the nice guidelines you kindly provided I noticed this
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
I am a little concerned why my GP did not stick me on 100 micrograms from the start.
I wonder what the odds of getting Crohns is. I then further wonder what the odds are of having crohns being a make and also having Hypothyroidism.
Many people who are hypothyroid before diagnosis find anything larger than 50mcg too much, too soon.
A large dose would only be started when suddenly hypothyroid, eg post thyroidectomy.
In fact many with Hashimoto's, have been heading slowly downwards into hypothyroidism for years before diagnosis and often have low vitamin levels and this can make it difficult to even tolerate 50mcg.
Getting vitamins optimal is essential.
If you turn out to have Hashimoto's, then it's very common to find gluten intolerance becomes a problem
You will find an enormous number of posts about food intolerances, particularly gluten, on here. That is one of the prime reasons it's important to test for high thyroid antibodies
I read that the reference dose of Levothyroxine is 1.6 micrograms per KG.
But that is based on full replacement dose - typically post total thyroidectomy. If you have remaining thyroid function, putting you straight onto a full replacement dose would be likely to see you significantly over-dosed.
There are many factors which affect required dose. Using weight alone is not good science or medicine.
If you read posts here for a while, you'd find quite a number who wished they had not increased their doses as fast as they did. Speed of increase is a difficult area. I am not aware of good research into the issues. Indeed, research is difficult because the whole process is a one-off.
We cannot know what 14.5 really means because every lab has its own reference range. The range for TSH is somewhat more consistent - and 6.5 would be over every range I have seen in recent years. Typically on levothyroxine you'd expect to be somewhere around 1 or below. (Not that assessing dose by TSH alone is good practice.)
Hi - Sorry to read you are not feeling well. Like you I blamed anything and everything on the Crohns and the gut TB that preceded it - for over 30 years. I was eventually diagnosed with Hashimotos here in Crete when I was 59 back in 2005.
I have had lots of surgeries for Crohns complications over the years but sorting the thyroid has been a huge step to wellness.
B12 is metabolised in the Terminal Ileum so you will be low - which is one cause of wrist pain - along with low thyroid and low VitD. Your B12 test result will be skewed as there will be some in the B Complex - but not enough. Jarrow Methylcobalmin B12 from Amazon are popular here on the forum - a lozenge to be kept under the tongue to avoid gut issues. Thorne Research do a good B Complex - again from Amazon. Crohns sufferers are also LOW in VitD. I take 5000 iu's daily - sometimes more.
VitD is anti-inflammatory - steroidal - pro-hormone so very good for Crohns. I also take Selenium - Zinc - Omega3 -VitK2-MK7- Magnesium - VitC. I am also gluten and dairy free to help gut healing. No medication for Crohns.
Your T3 was not tested - this is the Active hormone needed in every cell of the body. Brain has first call then the gut/immune system. - so when low the gut suffers. I am suspecting your level will be low.
Please do try to keep inflammation down as with Crohns inflammation it can permeate beyond the gut and into the lower back and hips. I also take organic turneric capsules. I am now struggling with hip pain after 55 years with Crohns - so take care.
You can click onto my name above and read more of the edited bio !!
Private Testing will get all the correct testing that the NHS choose to ignore ! The main website of this forum has the information - see below ....
You didn't say if your doctor had raised your levo to 75 which is what he should have done as your tsh is still out of range. T4 should be at the top of the range as should your t3. Also you should leave 24 hours between your last dose of levo and your blood test and fast having water only. Take your levo after the test. Jo xx
Any testing you have done ask for a printout of the results, so you can compare them each time you have testing done, you are legally allowed to have a copy.
really sorry that you find yourself suffering with thyroid problems.
As you have crohn's that may well impair your ability to absorb levo so you may end up needing higher doses of levo.
Having said that, the standard protocol in the UK is to start on 50mcg and then increase in doses of 25mcg until you get to the right dosage. Think there is some debate over this and personally I would have to say it's pretty cruel to be on the receiving end of that regime but I also understand that it's in part about avoiding over-medication - which is potentially harmful as well and can leave you feeling extremely unwell for a while.
Unfortunately levo seems to be a medication to which the body responds quite slowly - hence the 6 weeks periods between reviewing and and changing doses ... though have to admit that I am very disappointed by the way GPs look at results and don't actually bother to ask patients how they feel, given that treatment with levo doses seem to mean that normal range doesn't really apply and generally people seem to need levels towards the lower end of the normal range to feel okay.
My own personal experience was to be started on the ridiculously low level of 25mcg which actually left me totally unable to function after being more or less symptomless before hand. I lasted about a week on that does because I was just getting to the point where I really would rather have been dead than living dead so unilaterally upped my dose. At 6 weeks my GP decided that 50mcg was sufficient without even bother to speak to me - I know it wasn't because I was still struggling with muscle weakness - stuck it out for a few weeks until the muscle weakness really was starting to make things totally intolerable and then unilaterally went up to 75mcg - which has resolved most of the muscle weakness so seems quite close to what I need - and I've been there for about 4 weeks now - so leaving it a few more weeks before coming clean and asking for a blood test.
Don't know if this helps you at all. You are in a really awful place to be but you really aren't alone and there are others that have been there and still are there. I can't do anything practical - just let you know that you aren't alone.
I have PA which is another condition that affects ability to absorb levo - though in my case that's mainly through lower stomach acidity. PA mainly affects the absorption of B12 but its an auto-immune condition about about 40% of people with PA go on to develop auto-immune thyroidosis (hashimoto's)
Crohn's is a condition that can also affect ability to absorb B12 so just wondering if you may also have B12 deficiency going on as well - symptoms have a huge overlap with thyroid.
The normal test for B12 - serum B12 - misses about 25%of people who are B12 deficient so if B12 was one of the tests that was done it may be worth posting your results on the PAS forum.
I to suffer from hyperthyroid /graves disease. Its not fun being tired all day long. I also have high blood pressure and take 300 mgs of meds a day for my blood pressure. I will pray for u and hope u feel better soon. Take care.
Thank you all so very much for your responses. It's now clear that for me this was a "you don't know what you don't know" situation.
I have an appointment with my GP on Thursday which I booked over a month ago anticipating issues. I will discuss my LT dosage around what I now know are limited blood work data. Having read a few posts on here I may not get the response or consultative help I need from my GP.
So my next move will be to ask for T3 and vitamin levels to be checked after six weeks (lab won't repeat thyroid tests earlier).
If my GP won't support the vitamin and T3 test can I get these done elsewhere and if so where?
All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test and take afterwards. This helps keep the TSH at its highest as it drops throughout the day and could mean the difference between the doctor reducing dose or increasing.
We should have a blood test every six weeks with a 25mcg increase crease until TSH is 1 or lower with FT3 and FT4 in the upper part of the range. These are rarely tested but we have two private labs which will do these and they are home pin-prick tests.
All vitamins/minerals have to be at optimum, B12, Vit D, iron, ferritin and folate as deficiencies can also cause symptoms. I will give you a list of clinical symptoms and you will be amazed but even more amazing doctors or endocrinologists seem to know none. Before blood tests and levothyroxine, we were diagnosed upon clinical symptoms alone and given a natural dessicated thyroid hormone - in use since 1892 then they switched over to blood tests and levothyroxine in the late 1950s/60s. Some members do buy their own NDT.
They will test T4 and T3 (sometimes) but the Free T4 and Free T3 are better. I shall give you a link and read about why these two are important. Also B12, Vit D, iron, ferritin and folate should be checked too.
Thanks for that. I also read about Carpal tunnel being a symptom of being hypo.
I asked about the nerve tests that I had done and they were all clear. So I have put my wrist down to carpal at the moment. GP had no clue that this was a potential symptom. I also had to educate him on the influence Orlistat has on LT.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's
Drink plenty of fluids in 24 hours before test to keep hydrated and can drink water night and morning before test (but avoid tea or coffee until after test)
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Someone needs to write to this man.
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