UPDATE: My doctor increased my dosage today to 75 mcg and wants my labs checked again in 4 weeks. Thanks so much for all of your helpful feedback and encouragement!
Hello ~
I was diagnosed with hypothyroidism in August 2019 after experiencing symptoms like unexplained weight gain, brain fog, low mood and an elevated TSH of 4.65. My endocrinologist started me on Levothyroxine 50 and after eight weeks, my TSH went down to 2.90, so he increased the Levothyroxine to 62.5. Eight weeks after taking the increased dose (yesterday) I had my labs done and TSH is 3.43. I will include the additional lab values and ranges below. I understand that this process takes time and adjusting to find the right dose, but is it common for the TSH to actually increase after a dosage increase? I notice I seem to feel much better 1-3 weeks after starting and increasing the dosage, but then by weeks 5 or 6, my symptoms seem to return and I almost feel even worse 😔.
I have never missed a dose and I take it each morning at least an hour before eating. I also have my blood drawn at the same lab, same time of day (first thing in the morning) and 24 after my last dosage of Levothyroxine.
Thank you so much for any help/insight. I can’t wait to feel better and it stay that way.
December 2019
TSH: 3.43 (0.358-3.740)
FT4: 1.01 (0.76-1.46)
T3: 3.01 (2.3-4.2)
October 2019
TSH: 2.60
FT4: 1.11
T3: 3.0
August 2019 *diagnosed*
TSH: 4.65
FT4: 1.12
T3: 2.98
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Katie1003
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Do you have Hashi's - high antibodies? If so, it's not unusual for results to jump around, and for your thyroid to get worse, which would mean the TSH rises. And, even if you don't have Hashi's, improvements are rarely linear. It's often two steps forward, one step back.
I notice I seem to feel much better 1-3 weeks after starting and increasing the dosage, but then by weeks 5 or 6, my symptoms seem to return and I almost feel even worse
This is how it works. The body is glad to have more thyroid hormone at first, but then realises it's still not quite enough. So, all it means is, you need an increase in dose. Nothing to worry about.
T3: 3.01 (2.18 - 3.98)
Is that an FT3 or a TT3? Difficult to tell from the narrow range. If it's not FT3, then it's the wrong test and doesn't give us any useful information. It's always the FT3 - Free T3 - that we need.
Thank you so very much for your fast and helpful reply! No, I do not have Hashimoto. My labs indicated antibody value of less than 1. The ranges are for T3, FREE. I copied and pasted the ranges from my labs but noticed they are actually 2.3-4.2 pg/mL. I will update my post. Does any of this information shed anymore light as to what could be going on? Thank you, again❣️
Just because your antibody test was negative, doesn't actually mean you don't have Hashi's. About 20% of Hashi's sufferers never have raised antibodies. So, you could still have it.
On the subject of ranges, I'm not quite sure what you're saying, there. Ranges vary from lab to lab, so you need to use the range that goes with your test result - did you have a print-out of results with range beside them? You can't use a range from anywhere else, so not sure what you mean by you 'noticed' they're actually… Where did you notice it?
But, in any case, I don't think anything is going on. TSH results can vary, and I don't think the difference is anything to ring alarm bells. It's high because you're under-medicated. Your FT4 is only 35.71% through the range, and your FT3 is only 37.58%. They should be at least over 50%. You need another increase in dose.
Have you had BOTH TPO and TG thyroid antibodies tested?
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
62mcg is still a tiny dose
Most people need somewhere between 100mcg and 200mcg Levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
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 TPO or raised TG Thyroid antibodies
Ask GP to test vitamin levels
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)
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 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
TSH rises if the thyroid gland is struggling and if we're not yet on a sufficient dose of levothyroxine. Our dose is gradually increased and the aim is a TSH of 1 or lower but many doctors don't increase levo dose when it reaches 'somewhere' in the range despite us still having symptoms. In the following link the doctor states exactly what TSH means and I doubt many doctors are aware of the reason.
You were fortunate to be diagnosed in August with a TSH of 4.65 as many doctors (in UK) seem to have been directed not to prescribe levo until TSH is 10. People could be quite symptomatic by then. We used to be diagnosed upon clinical symptoms alone (before blood tests and levo were introduced) and given NDT (natural dessicated thyroid hormones - now withdrawn from being prescribed) and levothyroxine (T4) replaced NDT which contained all of the hormones a healthy gland would have produced.
The aim is a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the ranges (the 'frees' are rarely tested).
Levothyroxine is an inactive hormone and its job is to convert to T3 (liothyronine) and it is T3 which is the Active thyroid hormone and is needed in the millions of our T3 receptor cells. That's why we need an optimum dose of hormones. Your T3 result doesn't state whether its a Free T3 - which gives a more accurate number. Your T4 gives an F in front so that's a Free T4. Both 'frees' are more informative. Youwill find the following helpful and the doctor who wrote the three articles would never prescribe T4 and his method is more holistic.
How can a person have thyroid issues when the results indicate otherwise. It's confusing because I read that something like weight gain, which you associate with Hypo, can be Hyper Thyroid. Hence if results and or symptoms aren't definitive, what is?
Fibrofoggy, in the case of this original poster the results very clearly indicate hypothyroid. Most people will be 'lucky' enough to be in this position. Thyroid panel blood results for someone who has an overactive thyroid, Grave's disease, look very very different and are pretty unmistakeable as hormone levels will be double or more than the top of the range.
It is possible to have a thyroid issue but have much more subtle blood tests than this poster that need careful interpretation. Often the problem is that doctors are not good at reading the blood tests! I'll have a look at your own post and see if I can say anything useful.
Katie1003, you were given a really tiny increase in dose. A usual dose adjustment for Levothyroxine is 25 mcg, but you were given half that. TSH is thyroid stimulating hormone, an output from the pituitary reacting to low levels of thyroid hormone. It's not a completely accurate measure of how much hormone is in your body, it's just a call from the body to have more hormone.
Both 2.6 and 3.43 are high TSHs, I think it's just a case of the body asking for more, and realistically we can't really distinguish between these two numbers.
The practical upshot for you is the same, you're still quite undermedicated, so you need a dose increase. It's likely you'll need several more increases to get your numbers looking good - you want to see freeT4 near the top of the range in the first instance. From a patient perspective, it's actually very good to have a responsive TSH that tends towards being high. Doctors will sometimes dose looking at TSH only, so having a bouncy high TSH makes it more likely you'll get the increases you need.
Best practice is to have a dose adjustment of 25mcg, then hold on that for 6 weeks, have a blood test and then adjust again, a blood test 6 weeks later, and carry on like that. Try to avoid being given these half increases, as it will double the time you're waiting to feel better. This can easily take 6 months even with a doctor doing everything perfectly.
As others have mentioned, your experience of feeling better at first then maybe worse than ever a few weeks later is a very common experience when adjusting a dose of Levo. If anything it shows things are all going well and as expected. The most important thing is you keep getting adjustments every 6 weeks until symptoms resolve long term.
The same thing happened to me and I was quite alarmed to get the result. Like you I was "lucky" to be getting treatment with a TSH at that level. I realise now that TSH isn't really much of an indicator and you really need to get your FT3 up. My TSH went down to its lowest level yet (1.64) but so did FT3 so it's not a reliable indicator. Another thing is to get your ferritin, vitamins D and B12 tested. Even though my blood count was normal it turned out after a year of seeing another doctor that my ferritin was very low. We need to have optimal levels of these 3 in order to make and convert thyroid hormones so definitely get these checked if you haven't already.
Another thing about TSH is that it is higher mid-menstrual cycle than at the beginning if that applies to you.
That is extremely helpful and I really appreciate your feedback. I have had everything tested besides Ferritin and I will ask to have it checked. I also was curious if there was any difference in cycle/TSH and am so glad you shared. I was at the very beginning of mine when I had the last test done. My doctor increased my dosage this morning to 75 mcg. Thank you again!
It does take a while to reach optimum dose.. I’d say it was over a year for me. You’re still on a pretty low dose and my meds were increased by 25 mcg at a time whereas your doctor is increasing by even smaller increments which is probably a good thing. Your TSH can fluctuate a bit and I’ve rarely had same readings in 30 years. Hang on in there , The number one thing for this is patience, I’m afraid. Be prepared to distract yourself when going through a down phase. All the best!
Thank you very much for your helpful feedback and words of encouragement! I sincerely appreciate it. My doctor increased my dosage to 75 mcg today so I will start taking it tomorrow. Thankful to know everything sounds “normal” and that it does take some time and it will get better. It’s frustrating when I feel better and then it goes away 😣. Thank you again!!
Ha ha ..yes what is normal!? I have to say it crept up on me when I realised that I was no longer checking my pulse and was feeling happier, feeling clearer minded, actually had more energy. Slowly but surely, one day at a time etc!
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