I am currently on 50mg of Levothyroxine after being diagnosed with an under active thyroid and Hashimoto's. For a while my TSH levels have been unstable and at times the levels would be high or very low.
Since September 2019, my levels have been “in range”. However, I continue to feel fatigued, have trouble concentring (sometimes even speaking clearly) and experience consistent low mood.
I have suffered from depression in the past and it difficult to establish if it’s my thyroid or depression.
Results:
14/08/2019 - Before treatment with 50mg levothyroxine
TSH - 7.3 (0.2-4.5 mU/L)
Free T4 - 12 (9-21 pmol/L)
19/09/2019 - After treatment
TSH - 2.0 (0.2-4.5 mU/L)
Free T4 - 14 (9-21 pmol/L)
Total T3 - 1.6 (0.9-2.4 nmol/L)
15/10/2019
TSH - 2.0 (0.2-4.5 mU/L)
Free T4 - 12 (9-21 pmol/L)
24/12/2019
TSH - 3.8 (0.2-4.5 mU/L)
Free T4 - 13 (9-21 pmol/L)
Recent results
TSH 2.4 (0.2-4.5 mU/L)
Any advice on my current treatment plan? I continue to take 50mg of Levothyroxine.
We can't interpret your results without the reference ranges that come with them. Ranges vary from lab to lab so can you please add the ranges.
Also, to compare results accurately, the tests must all have been done under the same conditions every time, i.e.
Same time of day - ideally no later than 9am
Nothing to eat or drink before test other than water
Last dose of Levo should be 24 hours before test
Were all your tests done like this?
Your Free T4 is virtually the same every time, allowing for the fact that nothing is static.
3 of your TSH results are either the same or very close, just one a bit higher - that may be because of timing of test, eating or something to drink other than water.
Total T3 test isn't useful, it's Free T3 test that we need to see as that tells us how much T3 is freely available. Total T3 measures the amount of T3 that is both bound to proteins and unbound (free) so that's no real help.
Was only TSH tested with your most recent test?
Vitamin tests haven’t flagged anything in the past. All within rage, with good D3 and B12.
Posting results is advised, just because something is within range doesn't mean that it's optimal.
In that case we can compare your results accurately.
As I said, your FT4 shows virtually no difference other than that which can be attributed to normal variation. Your TSH is the same, or near enough, for 3 of the tests, with one nearer the top of the range.
As you have Hashi's, there will be fluctuations in symptoms and test results.
I have gone from hypo to hyper twice after being diagnosed with Hashimoto's because of this I couldn't be treated with medication. I haven't been on a higher dose, and started on 50mg again in September 2019, after being taken off after I developed hyperthyroidism.
What were the results when you were "hyper" that resulted in your medication being withdrawn?
Unfortunately I do not have those results but my results were severe enough that I had to be examined at the hospital and had several consecutive check ups. I had severe symptoms and felt very unwell so it was clear that I was sick at the time and the medication was making things worse for me. After my levels stabilised I was put on levothyroxine again.
Is it possible that my dose is too low at the moment? My TSH and T4 seem to be "in range" but I don't feel healthy or like the medication is doing anything to help me with the symptoms. My GP seems to think that my results are perfect and my medication doesn't need any adjustments.
14/08/2019 - Before treatment with 50mg levothyroxine
TSH - 7.3 (0.2-4.5 mU/L)
Free T4 - 12 (9-21 pmol/L)
My T4 seemed to be stable even before the treatment while my TSH was high and sometimes increased to higher levels. I'm very confused, maybe I do not need this medication at all or maybe need more. My GP thinks everything is perfect now despite my symptoms.
OK, now that I have seen that you have edited your opening post with further information, I would comment as follows:
TSH 2.4 (0.2-4.5 mU/L)
Any advice on my current treatment plan? I continue to take 50mg of Levothyroxine.
You didn't answer whether TSH was all that was tested so I am assuming that it is. Testing TSH alone is inadequate, it's not a thyroid hormone, it's a signal from the pituitary. If TSH is low then the pituitary is satisfied that there is (generally) enough thyroid hormone, if TSH is high then the pituitary has detected that there is not enough thyroid hormone.
FT4 and FT3 are the thyroid hormones that tell us whether we are taking enough Levo.
The aim of a hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
Your current TSH is too high suggesting an increase in your dose of Levo is needed, 25mcg now and retest in 6-8 weeks.
You really need FT4 and FT3 tested next time, and as I said Total T3 is no help, it needs to be Free T3.
The Vit D Council/Vit D Society recommends a level of 40-60ng/ml, I prefer my level to be at the top of the range.
B12 and Folate were fine.
Ferritin was low, it should be half way through range. If you are female then that is a wide range, it's usually the male range. For females we generally see 13-150, sometimes 15-300.
I would definitely get Ferritin re-tested, if nothing else. If it's any lower than it was back then, ask for an iron panel and full blood count to see if you have iron deficiency or iron deficiency anaemia. If those tests don't show any problems then you can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
Some members with Hashi's have found that a gluten free diet helps, also supplementing with selenium is said to reduce antibodies, as can keeping TSH suppressed.
TSH was the only thing that was tested and my GP thinks that I only need to be tested once a year now because my TSH is stable
My T4 seemed to be stable even before the treatment while my TSH was high and sometimes increased to higher levels. I'm very confused, maybe I do not need this medication at all or maybe need more. My Hashimoto's was confirmed with a scan and a blood test for antibodies. My GP thinks everything is perfect now despite my symptoms.
With Hashi's you can't really assume anything. The nature of Hashi's is that the immune system will continue attacking the thyroid over time until it is destroyed. There is no saying when these attacks will happen, you can be stable for some time then it can kick off again. Fluctuations in symptoms and test results will happen, antibody levels will also fluctuate. Dose of Levo can be adjusted as and when necessary.
Don't rely on your GP (or even an endo) knowing about Hashi's, they tend to not attach much importance to antibodies or know much about Hashi's at all.
Your current TSH of 2.4 suggests that you need an increase in your Levo and even though your FT4 hasn't changed much it is very, very low in it's range, which means that FT3 will also be low and it's low T3 that causes symptoms.
To illustrate where levels should be, see the following:
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 when asking for an increase in Levo.
You can also refer to NHS Leeds Teaching Hospitals who say
My only other concern is that I was diagnosed with subclinical hypothyroidism. My TSH varied between 6-8 and has never exceeded 10 before the treatment. Due to my symptoms and high antibody levels, my GP decided to start treatment.
It seems like these recommendations apply to patients with overt hypothyroid.
I found this information:
Patients with subclinical hypothyroidism, because of the minimal extent of the thyroid hormone deficiency, may be controlled with total daily dosages of levothyroxine as low as 25 to 50 μg. This initial dosage should be maintained for six to eight weeks before a TSH measurement is repeated to guide adjustment of the levothyroxine dosage. The goal is to maintain the TSH level within normal limits; the dosage of levothyroxine should be increased if the TSH level remains above normal and should be decreased if the TSH level falls below normal. Once the correct dosage of thyroxine is established, the frequency of TSH measurement may be decreased to every six to 12 months.
VICTOR ADLIN, M.D., Temple University School of Medicine
I find all of this overwhelming as like you mentioned many GPs do not consider the effects of Hashimoto’s. I wonder if I actually need more or if something else is causing my symptoms, like depression.
My only other concern is that I was diagnosed with subclinical hypothyroidism. My TSH varied between 6-8 and has never exceeded 10 before the treatment.
It was classed as subclinical in the UK, some other countries diagnose hypothyroidism when TSH reaches 3.
You have Hashi's, your thyroid thyroid will continue to be attacked until it is totally destroyed and it certainly wont be subclinical then.
From your article:
Patients with subclinical hypothyroidism, because of the minimal extent of the thyroid hormone deficiency, may be controlled with total daily dosages of levothyroxine as low as 25 to 50 μg.
Not will be - may be.
This initial dosage should be maintained for six to eight weeks before a TSH measurement is repeated to guide adjustment of the levothyroxine dosage.
So TSH is used as a guide - which it shouldn't be, how we feel and the thyroid hormones should be the guide - but refer to Dr Toft's article and Leeds hospital.
Dr Toft also answered another question within that article:
Question 2:
I often see patients who have an elevated TSH but normal T4. How should I be managing them?
Answer:
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat thyroid function tests in two or three months in case the abormality represents a resolving thyroiditisis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune disease - the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to be come worse and try to nip things in the bud rather than risk loss to follow up.
Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSh of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient's normal TSH concentration.
I wonder if I actually need more or if something else is causing my symptoms, like depression.
Depression is a symptom of hypothyroidism. It's very simple. Your TSH tells you that you are undermedicated, you need an increase in your Levo. Whether you were classed as subclinical originally or not, you have autoimmune thyroid disease - hypothyroidism caused by Hashi's.
And TSH alone does not give the whole picture, you absolutely need FT4 and FT3 to be tested - FT3 in particular.
Plus, because you have Hashi's, and Hashi's can trash nutrient levels, it's important to regularly check them, and you already know that your ferritin was low 6 months ago and that your Vit D may be better higher in the recommended range.
Just to add to Seaside Susies detailed advice (which you need to follow) ,50mcg is a low dose and you may need more .How long have you been on that dose? Have you been on a higher dose? You cannot go hyper from hypo ,you can be over medicated.
I have gone from hypo to hyper twice after being diagnosed with Hashimoto's because of this I couldn't be treated with medication. I haven't been on a higher dose, and started on 50mg again in September 2019, after being taken off after I developed hyperthyroidism.
No, you didn't develop hyperthyroidism. That is physically impossible. You had a Hashi's 'hyper' swing.
This happens when the thyroid is under attack from the immune system, and the dying cells dump their stock of hormone into the blood, causing levels of FT4/FT3 to rise sharply, and therefore, the TSH drops. The high levels decrease by themselves as the excess hormone is used up and/or excreted.
Hyperthyroidism is where the thyroid produces too much - way too much! - hormone on a regular basis. And the levels don't go down by themselves. You would need anti-thyroid medication.
I am not a doctor and don’t know the correct terminology but this was how it was described to me. I have seen an endocrinologist and he never explained anything in detail. He said it was a unusual case and that I would need to wait until the levels stabilised.
My concern is that I was diagnosed with subclinical hypothyroidism. My TSH varied between 6-8 and has never exceeded 10 before the treatment. Due to my symptoms and high antibody levels, my GP decided to start treatment.
It seems the dose recommendations apply to patients with overt hypothyroid. My GP thinks my levels are normal and thus wants to keep me on 50mg. I still have symptoms that are uncomfortable like fatigue and mental fog. In fact nothing has changed since starting the treatment. I’m completely lost and unsure what to do.
I am following a gluten free diet but I’m starting to think it’s not helping either other than control my IBS since wheat, rye etc causes digestive problems for me due to their high FODMAP content
Endos often tell Hashi's patients that they are 'an unusual case' because they simply do not understand Hashi's and do not know how it works. The vast majority of endos are diabetes specialists, so only have the very basic training in thyroid that GPs have - although they may learn a bit more with experience. Sometimes. But, they do not know what a common or garden case of Hashi's looks and behaves like. So, don't take too much notice of anything an endo says about your Hashi's!
The UK is one of the only two countries in the world (can't remember the other one, Canada, I think) where they insist your TSH gets to 10 before they will call it overt hypo. In reality, you are hypo when your TSH gets to 3, so at 6-8, you were pretty hypo, no matter what your doctors may have told you. They wouldn't even know!
You still have symptoms because with a TSH of over 2, you are under-medicated - once again, no matter what your GP tells you. You have never had your FT3 tested, but I'm guessing, it's pretty low. And, it's low T3 that causes symptoms - and, being a cynic, I believe that's why they never test it! So, no, your levels are not 'normal', they are just 'in-range' - which is all a doctor means when he says 'normal'. But, the ranges are much too wide. A truly 'normal' TSH, that of a euthyroid person, is around 1. But, when we're hypo, we usually need it a lot lower than that to get our FT3 where it needs to be to make us well.
Are you 100% gluten-free? It's not easy, because they tend to slip gluten into just about everything! How long have you been gluten-free?
The reason we suggest a gluten-free diet is because Hashi's people are often gluten-sensitive, even if they don't have Coeliac Disease - which a lot of them do. It's something that's worth trying to see if it helps you feel better. If you don't think it is having any beneficial effect, try eating gluten again, see if you feel any worse. If you don't, then you might as well give up the gluten-free diet. But, if it is controlling your IBS, then it's probably worth continuing it. Although, IBS is a hypos symptom, so if you ever manage to get optimally treated, you might not need it anymore.
So, what to do? Well, if your GP really cannot be persuaded to give you an increase in dose - and remember, he has no actual idea what he's doing, and his aim is not to make you well, it's to get your TSH somewhere in-range, and he doesn't really care where - then the only alternative is to self-treat. If that's a possibility for you. Start by getting private tests, and test everything thyroid related:
TSH
FT4
FT3
vit D
vit B12
folate
ferritin
That will tell you what you need to do next. And, you can buy all the necessary vitamins/minerals, plus levo/T3/NDT on-line. And, we are here to help you and support you all the way!
I’ve been gluten free for about a year though as you said it’s not easy and sometimes I have consumed gluten by accident. I try my best to avoid it and read products labels.
Due to the current situation, I had a GP appointment over the telephone today. She refused to acknowledge that some people may feel better with the TSH below 2.0
She also said that my results are perfect as they are and that she won’t increase my dose until something changes.
Her plan for now is to do more blood tests and a sample for my IBS to rule out anything else and try a low dose of sertraline/antidepressant for low mood and fatigue.
I’m not sure what to think or do. GPs can be intimidating and I feel unsure about self medicating as I don’t want to make the situation worse.
I might do a private blood test to check my current T4 and T3 levels as my medical centre will only check my TSH for now.
I’m thinking about switching my Levothyroxine from morning to evening to improve its absorption. I often don’t have enough time in the morning to wait before eating. Is this a good idea?
Pharmacotherapy: Hypothyroidism—should levothyroxine be taken at bedtime?
Mark Vanderpump
Up to one-third of patients treated with levothyroxine for primary hypothyroidism have biochemical evidence of inadequate thyroid hormone replacement. Could treatment effects of levothyoxine be optimized by bedtime administration on an empty stomach? A new study reveals the answer and also sheds light on other possible benefits of this alternative timing.
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Her plan for now is to do more blood tests and a sample for my IBS to rule out anything else and try a low dose of sertraline/antidepressant for low mood and fatigue.
As I said, she has no real idea what she's doing. She doesn't have the training to know. But, like so many doctors, she will bluff it out to the end - maybe she even believes what she says, I don't know. But, you do not need an antidepressant, you need a decent dose of thyroid hormone, which will do you far less harm! But, doctors get financial incentives for prescribing antidepressants. They get nothing for levo. I think that's very telling.
I’m not sure what to think or do. GPs can be intimidating and I feel unsure about self medicating as I don’t want to make the situation worse.
Yes, they can. They are taught in med school that they are superior to us mere mortals, the patients, and that we should all just shut up and do as we're told! But, it has been said many times that their job is not to dictate to us, but advise us so that we can make our own informed decisions about our own health. A lot of them still refuse to accept that. They prefer to dictate. It's so much easier for them.
Why do you think you would make the situation worse by self-medicating? Do you really think that you could do worse than your GP? She's not exactly making a great job of it, is she. And, you won't be on your own with it, we're all here to help you.
Getting a private test done is a good start to taking control. Trying taking your levo at night is a good idea. It suits a lot of people much better. Keep reading and learning and eventually, you will know what to do for the best.
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
Please add ranges (figures in brackets after each result)
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
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
Ask GP to test vitamin levels and thyroid antibodies if these haven’t been tested yet
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
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Guessing you are in Scotland as they seem to test Total T3. FreeT3 is a better test
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
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