I am new to this forum and everything thyroid related so forgive me if I am not detailed enough or make mistakes in my post.
I am a 48yr old male who was diagnosed as hypothyroid in May 17.
My Go started me on 25mg of Levothyroxine and every 6 weeks I have had my dosage increased until I was out on 100mg at the end of September 2017.
My symptoms of being tired, feeling light headed, headache and brain fog have not gone away or altered since being on this medication. In fact I have felt worse since moving up from 75mg to 100mg Levothyroxine. I told my doctor that I feel worse than ever and she has told me to reduce the dosage back to 75mg (yesterday 16.11.17).
I managed to get a copy of my most recent blood tests which were done on October 25th 2017.
This is what they were and what the lab report states:
Serum free t3 Level - Normal - No Action
Value 4.5 pmo/L Range 2.80 - 7.10 pmo/L
Serum free T4 Level - Normal - No Action
Value 15 pmo/L Range 9.00 - 26.00 pmo/L
Serum TSH - Normal - No Action
Value 4.17 mu/L Range 0.27 - 4.20 mu/L
Estimated GFR - Normal - No Action
I feel so light headed and tired all the time and it is soul destroying.
I have told the GP I feel worse now than I did before I started this medication and got told I was stressed and she wanted to put me on anti depressants (sertraline). I have not taken these even though she prescribed them.
From what I have read in this forum I believe my TSH Level is still high even though the blood test reports says it’s normal within range. I showed my GP some evidence that 4.17 is still outside the desired range and gotbthe reply that because it is within the normal range she cannot raise the Levothyroxine dose she is governed by NHS guidelines because the figure is classed as in normal range.
I don’t understand the other figures and what they may mean.
I’m hoping someone can help me as I feel so awful and that I am left fighting a battle on my own without any help from my GP.
Any advice or help would be much appreciated as to what everything means and what I could or should be doing next.
Written by
CycleKing
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Unfortunately, "normal" is an opinion that is grounded solely in blood work ranges for some GPs rather than paying attention to how a hypothyroid patient is feeling or responding to treatment.
The experience of members here is that there needs to be a watchful eye on the levels of thyroid hormones and vitamin and mineral levels because there's a difference between something being within a reference range and being in a part of the range that is optimal for effective use of thyroid hormones (whether our own or supplemented/prescribed ones).
If you have the actual numbers and results (with their reference ranges) of your recent blood work for vitamins and minerals like iron, ferritin, folate, vitamins B12 and D), please post them, along with their reference ranges, as it will help members to comment.
If you don't have the results, please obtain a copy by contacting your GP's reception, and then post them, with details of your levo. etc. and that might allow members to make helpful observations or suggestions.
I will try and get hold of the blood test results although the attitude when asking for copies of blood tests would make you think they were hiding state secrets!
From the recent blood test information i have posted, is there anything obvious that can be determined from them alone?
Serum free t3 Level - Normal - No Action Value 4.5 pmo/L Range 2.80 - 7.10 pmo/L You're in the lower part of the range
Serum free T4 Level - Normal - No Action Value 15 pmo/L Range 9.00 - 26.00 pmo/L You're in the lower third of the range
Serum TSH - Normal - No Action Value 4.17 mu/L Range 0.27 - 4.20 mu/L You're just within the top of the normal range for non-hypothyroid people.
As you know, your TSH is within range but you might prefer it to be lower, depending on your symptoms. You need a dosage adjustment if you are still feeling symptomatic and I don't know why your GP is claiming there are guidelines that prevent a more appropriate dose.
An appropriately-medicated hypo patient tends to find that the TSH is suppressed to <1 as that is typical for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
Clutter and SeasideSusie have very useful quotations from appropriate sources to back this up.
Was the appointment for your blood draw as early in the morning as practical? Did you fast overnight (water allowed) and make sure you'd not taken Levo for 24 hours? This gives a good chance of catching the highest reading of TSH in your day which can be useful when assessing the need for an increase or to avoid a reduction in dose. Seaside Susie describes this as a patient to patient tip which we don't discuss with doctors or phlebotomists.
What has your GP said about your high within range TSH and your in the lower part of their respective ranges FT4 and FT3?
Have you ever felt well, if so what dose and what were the test results?
Have you had thyroid antibodies tested - what was the result - were they high - Hashimoto's?
The blood draw appointment was early morning but i wasn't told to fast or not take my levo tablet.
What has your GP said about your high within range TSH and your in the lower part of their respective ranges FT4 and FT3?
My GP said that because my TSH level was in the normal range that an increase in dosage could not occur because that would be against NHS guidelines as the result indicated it was normal even though i said i felt even worse. More worryingly, i have been told to reduce levo because of how i feel?
With regard to FT4 and FT£ ranges all the GP aid was that they were normal.
I have never felt well on any dose of levo yet. I started on 25mg and got up to 100mg after which i feel even worse. That's why i have been told to reduce to 75mg!
I am getting the feeling that both of the GP's i have seen have no clue what they are doing and it is worrying me sick.
Seaside Susie has probably covered this but your blood test results are affected by taking the levo within 24hrs of it.
TSH is lowered after eating - so, there's a chance that it was lower than it might have been.
And, time of day matters. You can read about the daily rhythms of our thyroid hormones here: healthunlocked.com/thyroidu...
As Seaside Susie says, the tip about having your test after fasting overnight is a patient to patient tip that is not shared with GPs or HCPs like phlebotomists.
You are undermedicated to have TSH 4.17 while taking Levothyroxine. It's almost top of the range for goodness sake!
You don't need Sertraline. You need your GP to dose you optimally. You might be better off seeing a GP who knows something about hypothyroidism and how to dose.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.27 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher @thyroiduk.org if you would like a copy of the Pulse article to show your GP.
The main GP and owner of the practice will not budge on increasing my Levo. He said that it would have to be done under the instruction and supervision of a specialist
Hence my total lack of confidence in that practice.
I suggest you find a new GP practice too. This is a lifelong condition and your GPs are obviously clueless about how to treat it. You need a GP with better understanding.
If you have sufficient Levothyroxine raise your dose by 25mcg.
I was thinking about doing that but was a scared of doing it without instruction from my GP or specialist. It shows how clueless my GP is as i have been told torecude from 100mg to 75mg because i have felt worse since going up from 75mg to 100mg
You've felt worse because you are undermedicated. Frankly, with a pair of clueless GPs like you have, you can hardly do worse by self-medicating. Ideally you will order a TSH, FT4 and FT3 test 6-8 weeks after increasing dose to check levels.
Cycle King , May I suggest you change your GP and Medical Center / Surgery as this is sometimes what it takes.
My friend has been '' monitored '' for 3 years with hypothyroid and a TSH ( Thyroid Stimulating Hormone ) of [ 13 ] range [ 0.2 - 4.5 ] but the GP refused him medication stating he still needed monitoring ?
He felt like he couldn't carry on anymore as he felt so unwell .
Has has now changed to a different GP in a different Medical Center.
He went for the first Assessment as a New Patient yesterday and the new GP was so shocked at his thyroid results and the fact he wasn't getting any treatment .
My friend didn't get his New Patient Assessment it was deferred to a later date for the GP to go through all my friends records .. he left the surgery with a prescription for 50mcg of Levothyroxin .
CycleKing Oh gawd, I despair at all the posts we are reading lately about idiot doctors.
TSH - 4.17 mu/L Range 0.27 - 4.20 mu/L
Just 0.03 away from the top of the range. Far, far too high.
FT4 Level - 15 pmo/L Range 9.00 - 26.00 pmo/L
Just 35% through range
FT3 Level - 4.5 pmo/L Range 2.80 - 7.10 pmo/L
Just 39% through range
TSH (Thyroid Stimulating Hormone) is a signal from the pituitary to produce thyroid hormone when the pituitary detects that there's not enough. When there's not enough thyroid hormone the TSH will be high, when there is plenty the TSH will be low.
FT4 is the measurement of thyroxine (thyroid hormone - T4 - this is a pro hormone which has to convert to the active hormone which every cell in our bodies need). If we don't produce enough ourselves, as in hypothyroidism, then we get replacement hormone - Levothyroxine.
FT3 is the measurement of the active hormone T3 that is converted from T4.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. See thyroiduk.org.uk/tuk/about_... > Treatment Options:
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.
Also -
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.
So we need enough Levothyroxine for us to feel well and our results to be in a place that brings that about.
Sometimes Levo can't work due to other factors, these being low nutrient levels (maybe deficiencies) and autoimmune thyroid disease (aka Hashimoto's) which often causes absorption problems which bring about low nutrient levels. Nutrients need to be optimal for thyroid hormone to work.
Ideally we need these extra tests:
Vit D
B12
Folate
Ferritin
and if Ferritin is low then:
Iron Panel
Full Blood Count
And to see if we have autoimmune thyroid disease:
Thyroid Peroxidase Antibodies
Thyroglobulin Antibodies
**
What you should do now is take the Pulse article written by Dr Toft to your GP and ask for an increase of 25mcg Levo immediately, retesting and increasing by 25mcg every 6 weeks until you feel well and symptoms abate.
Also ask for those tests listed above to see if there are other problems which need addressing.
When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.
PS - sorry, I've just seen you've had nutrients tested and you say they are normal or OK. Please post the results, with ranges, and we can see if they are optimal.
I will try and get my nutrient blood test results and post them as soon as i can.
I fear I am going to have to go private to get the proper treatment as I have no confidence in the GP's i have seen and they are reluctant to do anything else with me.
It is one long hard battle which makes you feel even worse.
You'll have seen this in multiple places but choose the doctor to whom you have a referral very carefully. TUK has a list of endocrinologists or doctors whom other members have found to be helpful.
Before being referred privately, email dionne.fulcher@thyroidUK.org for the list of thyroid friendly doctors. No good spending your money on one that is going to say exactly the same as your GP, too many toe the same line so you need to spend your money wisely. If there are any on the list you can get to, ask on the forum for feedback before going ahead and booking an appointment.
Just remind your surgery that in the UK we are legally entitled, under the Data Protection Act, to have a print out of our test results. As long as the GP has seen them they have no reason to refuse to give them to you unless they are being awkward, so if you are refused just mention that you're sure that no-one at the surgery wants to break the law!
You need to tell your doctor that 'guidelines' are not the same as 'rules and regulations'. With 'guidelines', she is still allowed to use her discretion.
If I were you, when you get the list of recommended endos, I would take it one step further, and write a post with the name of the endo you've chosen, asking if anyone else has seen him, and exactly what he was like. Some people get a nasty shock, even after choosing an endo from that list!
I have even seen the main GP at the practice and he will not budge on the matter. He said that if an increase in Levo is required to drop my TSH any further down it would have to be done under the supervision of a specialist.
I will do what you recommend and ask for opinions once i am in that position.
Just to give my experience if it's any help. I have increased from 75 to 100 to 125 and my tsh has been in range and my GP hasn't batted an eyelid and given me new prescriptions, so if you can bear it I would go to another practice. I have increased myself , not on her advice, telling her each time and she checks my blood pressure. I had the confidence to do the increases because of the knowledge and support of this forum.
The point is that they seem to say what they want as if it is universal practice when it isn't.
Also I have felt worse with each increase but finally am starting to feel better so it can take ages and you have to stick with it but of course watch over medicating.
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 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 and most consistent results
Step 4 increase Levo in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of this article from Thyroid UK
Email dionne.fulcher@thyroidUK.org , print article out and highlight question 6 to show your doctor.
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