My latest BT (I'm on 75mg of Levo) came back with the following: TSH - 2.34, T3 - 4.39 & T4 - 17.8. Does this look relatively 'normal' to you knowledgeable folk? To be honest, I've been on Levo, with increasing amounts starting at 25mg, then 50mg and now, as said, 75mg for the last 4-5 months and I'm still waiting to feel better. To add to all this almost from day one I've suffered on and off from lower stomach cramps, not excessive but it's not comfortable. Any opinions will be greatly appreciated.
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mus2
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The aim of a treated hypo patient on Levo, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges, if that is where you feel well.
Your TSH is too high but without the reference ranges we can't comment on the FT4 and FT3 results. Can you please post the ranges.
So your TSH is too high for a patient on Levo, your FT4 is only 58% through range and your FT3 is 34.86% through range so both of those are too low. You need an increase in your Levo - 25mcg now and retest in 6-8 weeks. Repeat until your levels are where they need to be for you to feel well.
In support of your request for a dose increase, the following information should be useful to show your GP:
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .................. This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L ............ Likely under Replacement
and
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
As mentioned in other replies, optimal nutrient levels are necessary
Extremely important to regularly test vitamin D, folate, ferritin and B12
Has GP done this?
If not request they do so ....plus thyroid antibodies
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Take no notice about weight and how much Levo you should be on. Weight is taken into account when deciding a starting dose after a person has a thyroidectomy. As for people who are hypothyroid and have not had a thyroidectomy then weight has nothing to do with it, this has been explained to tamina786 in replies to her own posts.
You have had a near total thyroidectomy, who knows how much thyroid you have left and how well it's functioning.
If you had had your thyroid completely removed, the starting dose of Levo may have been estimated by your weight. Then, if necessary, it would be adjusted to suit you. As you've had a near total thyroidectomy, maybe that is a starting point for your dose and it would be adjusted after testing and whether or not you are symptomatic. Many people have partial thyroidectomy and are not put on Levo. Doctors are all different, many have no clue at all, they make umpteen mistakes in treatment of hypothyroidism.
There is absolutely no "one size fits all" for patients as can be seen from reading posts on the forum. We need what we need regardless of how we become hypothyroid.
Maybe have a read through this post from yesterday which addresses the issue of weight and dose of Levo, particularly mine and helvella's replies - 4th and 5th ones down the thread :
According to your blood test results, you are still under-medicated, which is why you don't feel any better. You need another increase to 100 mcg and a retest after six weeks. 75 mcg is still quite a small dose.
My personal suspicion is that NHS GPs are reluctant to prescribe NDT orT3 on cost grounds
It's hard to find a doctor who has even heard of NDT and even if they have it's unlicensed in the UK so a doctor has to take personal responsibility if they prescribe it, many are not willing to do that.
As for T3, it has to be initiated and prescribed by an endo initially if they deem it necessary then if it's agreed that it's to continue then a GP takes over the prescribing and cost, but yes cost does come into it and some CCGs have refused to prescribe it at all.
You would benefit from a 25mcg increase in thyroid medication. There is no risk to you...you won't suddenly become "hyper" and have a heart attack but unfortunately that's not how your doctor sees it.
The thing is, your doctor feels "perfectly okay" since technically, you're "in the normal range", so he's not as likely to change "your" situation, lest it affect his liability. You'll have to appeal to his sense of self-protectionism and provide him with something that will make him feel "safe", like offering to monitor your vital signs (it worked for me).
Negotiation is more effective than education. Doctors already believe that they're the more educated person in the room. Show him a thyroid book and he'll chew it up and spit it out.
Here are some phrases to get you started (you'll want to practice them before the big day)
YOU: "Is there something you're afraid might happen if you raise the dose?"
Medicine Man: (thinks Yes, you'll die and I'll be responsible.) but says "It won't help."
YOU: "What if I were to monitor my vital signs and give you a report?"
Medicine Man: (oops, I'm stumped on this one...how do I say no?) says "Your dose is fine."
YOU: "I realize you might be concerned about your liability. Is that the issue?"
Medicine Man: "Of course not!"
YOU: "Good, so why don't we raise the dosage by 25mcg. I would never do anything to increase your liability and if the increase helps, I'll let the whole world know what a great job you're doing."
Medicine Man: "Increasing the dose won't help. I have you at the right dosage. Any symptoms you have aren't caused by your thyroid function."
YOU: "Well, why don't we rule that out?" Since it's not about your liability, there shouldn't be any reason not to increase the dose. I'm in the normal range with room to spare and you know as well as anybody that 25mcg more won't make me hyperthyroid."
Medicine Man: "No increase, you're fine at the dosage I've set."
YOU: "Okay, just so I understand, what exactly is the reason that you won't increase my dose, when it "could" make the difference for me. I understand that you don't believe the symptoms are related to thyroid but wouldn't you rather be a bit more flexible, since it isn't your liability that's at stake?" Doesn't it seem more reasonable to increase the dose, when there's no danger to you or to me? What do you have to lose by doing that?"
You're looking for reason(s) why the doctor won't increase the dose. He has a reason but it's not based on science, rather on some ideology or consensus thinking. Maybe all the other doctors in his village stop at 75mcg NO MATTER WHAT.
You may think that what I'm suggesting is a bunch of bulls**t but I can guarantee that until you confront your doctor and extract the REAL reason he won't increase your thyroid dose, you are STUCK. Doctors may be highly educated but they are also susceptible to the herd mentality. They care way too much about what their fellow doctors do and what their board of medicine tells them are "the rules."
I think the reason that virtually nobody is willing to confront their doctor is the fear of being "fired". It's true...some will tell you not to come back. If that doctor is the ONLY one you can afford to see, then use a LOT of empathy and praise first, then determine (negotiate) why they refuse to appropriately increase your thyroid dose.
I actually had a doctor confess her fear of liability so I know what I'm talking about.
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